Rare Disease Support & Research | All Dutch websites

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↳Essential ²⁴¹⁰¹⁶	Consumer Goods and Services	Businesses serving various basic needs.
↳Essential→Health ⁹¹⁵⁸⁹	Health and Wellbeing Resources	This directory features websites providing information, products, and services related to physical, mental, and emotional wellbeing.
↳Essential→Health→Disease & Treatment ⁴⁸⁰⁵	Holland: Health, Wellbeing & Disease	Resources detail a broad spectrum of health conditions and wellbeing practices available in the country.
↳Essential→Health→Disease & Treatment→Rare Diseases ²²⁹	Rare Disease Support & Research	These organizations provide support, information, and advocacy for individuals and families affected by rare medical conditions. Many focus on funding scientific research to improve diagnosis, treatment, and quality of life for patients with these often-overlooked illnesses.

1 Subcategories:	Titles:	Summaries:
Genetic Disorders ⁴⁸	Rare Genetic Conditions & Support	Resources focus on inherited disorders impacting health and development, often with limited prevalence. Many organizations provide patient support, research funding, and awareness initiatives for specific conditions.

181 Websites:	Organisations:	Summaries:	Related categories:	Related keywords:	Related locations:
birdsoft.nl	Niet vermeld	The website contains a personal history of Youri Vogels, born on September 22, 2000 in Breda, who had a rare condition called Creatine Transporter Deficientie. The text includes reflections on the natural life cycles - from caterpillar to butterfly, blossom to cherry, and from summer to autumn - to illustrate that growth is not always automatic. The website was updated as of June 23, 2024, and serves as a memorial to Youri Vogels (22-09-2000 / 10-04-2024).	Personal Stories → Autobiography ²²²	history ⁷²⁸⁶ nature ⁹⁰⁹⁴	North-Brabant → Breda ⁹⁰⁰³
mhserver.nl	Corticobasale Degeneration.nl	The website contains personal stories from Joke van der Wal about her own experiences with the diagnosis and its impact on her communication and life. The site describes Joke's disease progression, starting with a slight speech decline in 2022 and the diagnosis of CBD in December of that year. Furthermore, the website provides information about the disease itself, what it is, and emphasizes that patients are not alone and that peer support is important.	Social Organization → Patient Organizations ²⁵⁹	peers ⁸⁹ diagnosis ¹⁴⁹⁰ story ⁸²⁸⁵ communication ¹⁰¹⁶²
spierfonds.nl	Prinses Beatrix Spierfonds	The website provides information about muscular diseases, their impact on patients, and the current research activities of the foundation. The foundation encourages donations and other forms of support, including starting campaigns, making large gifts, recurring donations, and legacies for scientific research. The website also contains news, personal stories from patients, and a series about research into muscular diseases, as well as information about the organization itself and its collaborations.	Disease & Treatment → Medicine ¹⁰¹⁷	gene therapy ¹⁰ donation ⁵¹¹⁰ research ⁸⁹⁶⁷ collaboration ¹⁶⁰³⁶
stofwisselingsziekten.nl	Patiëntenvereniging voor Stofwisselingsziekten	The association supports adults, children, and families with these rare conditions, where a minor cell process error can have significant consequences. VKS offers information, contacts with other families, and advocates for the interests of those affected. The website contains news, events, a magazine, and blogs, as well as links to relevant research and infographics.	Social Organization → Patient Organizations ²⁵⁹	magazine ²¹⁸² family ⁶⁴⁶² event ⁴⁵¹⁹⁹
energy4all.nl	Stichting Energy4All	The website provides information about mitochondrial diseases, caused by a DNA error in the mitochondria (the body’s energy centers), which lead to serious symptoms and, in many cases, premature death. Stichting Energy4All supports the drug research of Professor Dr. Jan Smeitink and his team of Knondrion, in collaboration with the Radboudumc, and has contributed significantly to this research over the past years. The foundation’s goal is to increase awareness of this disease and to find a medicine to stop it as soon as possible.	Disease & Treatment → Diseases ⁸²⁹	medical ²¹⁶ disease ²⁸⁵ medicine ⁴³⁵ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
ncfs.nl	NCFS	The website offers information about cystic fibrosis, including diagnosis, symptoms, treatment, and life expectancy. It also provides webinars, articles, and blogs about the disease and life with CF, as well as information on peer support, coaching, and advocacy. In addition to information and support, the NCFS is committed to research on CF, organizes fundraising activities and offers a webshop and annual report.	Specialty Medicine → Cancer Care ⁹⁷	peer support ⁶⁸ brochure ¹⁶⁴² research ⁸⁹⁶⁷ treatment ²¹²⁰³
vsop.nl	VSOP	The association includes various aspects, such as members, board, employees, funding, and a comprehensive history. The website provides information about events such as the National Conference, the Rare Disease Day, and the Rare Angel Awards, as well as the ecza platform. The VSOP is involved in the development of a National Plan for rare diseases, and the website contains information about this plan, including recent developments and motions from the Dutch Parliament.	Social Organization → Patient Organizations ²⁵⁹	rare disease ¹² award ⁶⁴² conference ⁷⁶³
onderzoekmetmensen.nl	CCMO	The website currently contains all data from the old National Trial Register (NTR), ToetsingOnline, and the Research Portal. Professionals can manage research data via the portal and follow the future developments of the website. The Research Portal was launched on February 3, 2025, by the CCMO, replacing ToetsingOnline, which is now only available in read-only mode.	Research → Medical Research ³⁸⁴	researcher ²²⁰ portal ⁵⁹¹ registration ⁴³⁶⁶ data ⁵⁸⁷² research ⁸⁹⁶⁷
bloedziekten.nl	Stichting Zeldzame Bloedziekten	The foundation provides information on various rare blood diseases such as HX, CDA, HES, TTP, AIHA, DBAS, HS, KT, PKD, HE, and HPP, and refers to relevant sources. The foundation organizes inspirational days and events, such as the ‘Samen op Weg’ inspirational day on April 1, 2023, with the aim of strengthening the patient association and building friendships. The website includes a general report of the inspirational day and an announcement for a youth event in Giethoorn on September 9, 2023, as well as information about the National Rare Blood Disease Day 2024.	Social Organization → Patient Organizations ²⁵⁹	rare disease ¹² reference ³³² patient ⁴⁰⁸² association ⁸⁵⁶² event ⁴⁵¹⁹⁹
cmtc.nl	CMTC-OVM	The website describes various vascular malformations, including CMTC, capillary malformations, complex mixed malformations, CLOVES, Congenital Hemangioma, diffuse capillary malformation with overgrowth, granuloma telangiectaticum, hemangioendothelioma, Klippel-Trenaunay, lymphatic malformations, storkbite, PROS, Sturge-Weber, telangiectasias, tufted angioma, and venous malformations. The website addresses the diagnosis of these malformations, with attention to multidisciplinary clinics, clinical characteristics, genetic causes, reverse-phenotyping, and genetic mutations. The website provides information on the treatment of vascular malformations, including medication, new developments in laser therapy, interventional radiology, and treatments for specific conditions such as birthmarks and dermatology.	Cosmetics & Aesthetic → Dermatology ¹⁹⁸⁰	genetics ¹⁰⁴ dermatology ¹²⁷ treatment ²¹²⁰³
metakids.nl	Metakids	Metakids is an organization dedicated to researching metabolic diseases, as children are born with this condition every day. The website provides information about the diseases, the impact on families, scientific research, and the organization's activities, including stories from families and news. Metakids encourages visitors to donate, volunteer, make a bequest, or give to support the organization's mission and recruit regular donors.	Medical Care & Services → Pediatric & Child Health ²¹²¹	researcher ²²⁰ donation ⁵¹¹⁰ family ⁶⁴⁶² volunteer ⁸³⁶⁷ research ⁸⁹⁶⁷
join4energy.nl	Stichting Join4Energy	The foundation organizes activities and initiates donations to raise money for research projects. A significant number of children are born each week with energy metabolic diseases, which can have serious consequences, such as extreme fatigue. The foundation recently published its 2024 financial statements and organized a lottery where participants sold tickets.	Charities → Fundraising ¹⁰⁰⁵	research project ³⁷ lottery ²⁰⁷ medication ¹¹⁶⁴ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
ushersyndroom.nl	Stichting Ushersyndroom	Usher syndrome is a condition that causes both deafness and blindness. The foundation raises funds for scientific research into treatment options and supports patients and their families. Through scientific research, knowledge sharing, and awareness campaigns, the foundation hopes to create a future without the limitations of Usher syndrome.	Charities → Fundraising ¹⁰⁰⁵	awareness ¹⁷³⁵ patient ⁴⁰⁸² foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
pvp.nl	Stichting PVP	The website offers information about patients’ rights in forced mental healthcare and focuses on assisting patients through PVPs. Users can obtain assistance and advice via telephone, email, or chat regarding topics such as voluntary admission, forced care, complaints, or contacting a pvp. The website also contains information about the role of a pvp, sample letters, downloads, and tips for communicating information in simple language.	Health → Mental & Emotional Well-Being ²³⁷⁰⁴	mental healthcare ⁶⁹ complaint ⁶⁴⁷⁹ care ¹²³³⁸
mindplatform.nl	MIND Platform	MIND Platform offers a helpline, advocacy services, information on addiction, and a platform for youth. The platform serves as a connection point for patient and family organizations in mental healthcare and acts as a dialogue partner for various stakeholders. MIND Platform publishes news, annual reports, and articles on topics such as access to care, the impact of artificial intelligence, and political appeals regarding mental health.	Social Organization → Youth Organizations ¹⁷²⁶	patient organization ¹⁶ helpline ²⁸ mental healthcare ⁶⁹ advocacy ³⁵⁷ annual report ⁸⁷⁷
hersenbank.nl	Dutch Brain Bank	The NHB collects brain tissue from donors who have registered as brain donors. The NHB’s goal is to enable scientists to find causes and solutions for neurological and psychiatric brain diseases by making human brain tissue available. The NHB is constantly looking for new donors and seeks financial support through donors.	Anatomy & Systems → Neurology ¹³⁴⁰	disease ²⁸⁵ donor ⁷⁵⁷ research ⁸⁹⁶⁷
fahrpatientenvereniging.nl	Fahr Patient Association Netherlands	The website provides information about Fahr’s disease, including estimated patient numbers in the Netherlands and the impact of genetic research. It highlights the importance of donors, their role, and opportunities to make a donation. The website features a community, an expertise center in Utrecht, a newsletter, frequently asked questions, videos, and contact options for patients and caregivers.	Social Organization → Patient Organizations ²⁵⁹	disease ²⁸⁵ patient ⁴⁰⁸² donation ⁵¹¹⁰ newsletter ⁶⁵⁰⁴ community ⁷⁹³¹ research ⁸⁹⁶⁷
sosnl.nl	Stichting OverdrukSyndroom NL	The website offers information about symptoms, diagnosis, patient stories, and a forum for physicians. SOSNL publishes scientific articles, annual reports, policy plans, and newsletters, as well as infographics and posters. The organization provides support to patients, volunteers, and donors, with a focus on collaboration with doctors, insurers, and the public.	Mental & Emotional Well-Being → Disorders ³⁸	forum ¹³⁶² patient ⁴⁰⁸² donation ⁵¹¹⁰ research ⁸⁹⁶⁷
meeroverfabry.nl	CHIESI Farmaceutici S.p.A.	The website offers information about the symptoms and the unique experience of people living with Fabry disease. There is information about Fabry disease, symptoms, diagnosis, and how patients and caregivers can cope with the illness. The website also includes information for healthcare providers about the pathogenesis of the disease and its impact.	Health → Medical Care & Services ²⁹⁴⁶¹	healthcare professionals ²³⁵ symptoms ⁵⁵⁸ patient ⁴⁰⁸²
dvnexpertisecentrum.nl	Spierziekten Centrum Nederland	The expert center offers expert advice on the treatment of DVN and conducts scientific research. The DVN Expertisecentrum has initiated a nationwide registration of patients with DVN and conducts functional MRI studies. The website contains information about the diagnosis, treatment, symptoms, and genetics of DVN, as well as a summary of a webinar and a forum for peer support.	Disease & Treatment → Cardiovascular Diseases ⁹¹	healthcare professionals ²³⁵ diagnosis ¹⁴⁹⁰ patient ⁴⁰⁸² research ⁸⁹⁶⁷ treatment ²¹²⁰³	Limburg → Maastricht ⁶⁰⁰⁸
gastrostars.nl	Stichting Gastrostars	The foundation was established by Emma Kok after her participation in the talent show Ministars, aiming to raise more awareness about gastroparese. Gastroparese is a rare disease that often leads to misunderstanding and hinders the daily activities of patients. The website offers a platform for patients to share experiences, exchange advice, and provide support to each other. A patient's story illustrates the daily challenges associated with the illness.	Social Organization → Patient Organizations ²⁵⁹	patient organization ¹⁶ peers ⁸⁹ care ¹²³³⁸
wilmawestenberg.nl	wilmawestenberg.nl	The website provides information about Facial Infiltrating Lipomatosis (FIL), also known as Congenital Infiltrating Lipomatosis of the face (CIL-F), a very rare condition. It describes personal experiences of the author with the condition, including meetings with other affected individuals, such as Jaycee (8) in San Diego, mini-me Vela (3) in San Diego, and Josie (10) in Kansas City. The website documents media appearances of the author, such as appearances in the program 'You'll Get There' and 'Explosiv' on German television, where the condition and support contacts were discussed.	Personal Stories → Blogs ³³	germany ¹⁸⁵ meetings ¹⁰¹¹ medium ¹²⁹³
stsn.nl	Stichting Tubereuze Sclerosis Nederland (STSN)	The site contains information about the medical, genetic, and non-medical aspects of TSC. Specific information is available for parents of children with TSC and for adults with the condition. The STSN also offers opportunities for volunteering, donations, and purchasing products through an online store. Additionally, there is a peer support network and an expert network.	Charities → Fundraising ¹⁰⁰⁵	peer support ⁶⁸ parent ⁴³¹⁸ volunteer ⁸³⁶⁷ network ¹¹¹²³
oscarnederland.nl	OSCAR Nederland	OSCAR Nederland is a multi-ethnic organization that advocates for the interests of carriers and patients with sickle cell disease and thalassemia. The organization collaborates with the National Hemoglobinopathy Treatment Working Group to offer patients better treatment and a brighter future, including screening through heel prick tests. OSCAR Nederland provides information, peer support, assistance, and scientific research related to sickle cell disease and thalassemia, and publishes annual reports and strategic plans.	Social Organization → Patient Organizations ²⁵⁹	donate ⁷⁷ research ⁸⁹⁶⁷
amyloidose.nl	Amyloïdose Nederland	Amyloïdose is a rare disease characterized by the accumulation of misfolded proteins in organs and tissues, causing damage. The website provides information about different types of amyloïdose, such as AL-amyloïdose, ATTR amyloïdose, and AA amyloïdose, as well as potential treatments. The foundation is driven by volunteers and relies on donations and support to carry out its activities, offering patient stories and information about the disease.	Social Organization → Patient Organizations ²⁵⁹	patient ⁴⁰⁸² foundation ⁶⁶⁷⁸ story ⁸²⁸⁵ treatment ²¹²⁰³
stichtingborderline.nl	Stichting Borderline	The website offers information on BPD, its symptoms, different treatment methods, and the experiences of individuals with BPD and their families. Visitors can find peer support contact, a forum for asking questions and sharing experiences, and access to a telephone peer support line. In addition to practical information, the foundation offers advocacy and a literature list, and organizes a public day.	Mental & Emotional Well-Being → Disorders ³⁸	peer support ⁶⁸ symptoms ⁵⁵⁸ forum ¹³⁶² news ¹⁵²⁹³ treatment ²¹²⁰³
zichtopzeldzaam.nl	VSOP	The website contains an overview of the associated patient organizations and their contact information, as well as their presence on social media. Understandable descriptions of the diseases are provided, in collaboration with erfelijkheid.nl or the relevant patient organizations. The website provides an overview of recognized Dutch expertise centers for rare diseases and their pages on Orphanet, and contains quality documents related to the care for these diseases.	Social Organization → Patient Organizations ²⁵⁹	quality standards ¹² patient organization ¹⁶ expertise center ²⁹ disease ²⁸⁵
hemochromatose.nl	Hemochromatose Vereniging Nederland	The website offers information on hemochromatosis, diagnoses, treatments, genetics, consequences, nutrition, and understanding of the disease. Various materials, such as brochures, informative films, newsletters, annual reports, and articles, are provided to inform and support visitors. The association organizes events, offers peer support, and collaborates with umbrella organizations to represent the interests of patients.	Disease & Treatment → Diseases ⁸²⁹	iron ²³⁷ advocacy ³⁵⁷ member ¹⁰¹⁵⁴ treatment ²¹²⁰³
vlinderkind.nl	Stichting Vlinderkind	Epidermolysis Bullosa (EB) is an incurable skin condition characterized by the formation of blisters on the skin, caused by a disruption in the connection between the skin layers. Stichting Vlinderkind works with the University Medical Center Groningen (UMCG) to stimulate research and promote a sustainable life for people with EB. The website provides information about EB, donation opportunities, volunteer work, peer support contact and materials such as brochures and press releases.	Cancer → Brain Tumors ¹¹	umcg ²⁵ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
sarcoidose.nl	Sarcoidose.nl	The website includes information about the disease itself, including forms, symptoms, diagnosis, and treatment. It also features sections with experiences, blogs, and contact opportunities with fellow patients, as well as information on advocacy. The website offers various services such as a newsletter, a library of scientific articles, and activities such as meetings, training sessions, and sponsorship campaigns.	Patient Services & Rights → Patients ⁴⁵	news ¹⁵²⁹³ training ²⁸¹³³
stofwisselkracht.nl	Stichting Stofwisselkracht	The foundation supports research into metabolic diseases and stimulates activities in this area. Ongoing and completed research projects, including transcriptome analysis and MRI research, are being conducted. The foundation organizes events such as the Stofwisseltour and the Bart & Tijn Ride to raise money for research and collaborate with partners.	Research → Medical Research ³⁸⁴	patient ⁴⁰⁸² partner ⁴²⁷² donation ⁵¹¹⁰ research ⁸⁹⁶⁷ event ⁴⁵¹⁹⁹
debra.nl	DEBRA Nederland	The website provides information about EB, including its forms, potential complications, and treatments. The organization hosts various activities, such as peer support meetings, events and guidelines, and offers a handbook with practical tips for daily care. DEBRA Nederland is financed through various sources, including subsidies and donations, and has an ANBI status, indicating that it is a public benefit organization.	Social Organization → Patient Organizations ²⁵⁹	peer support ⁶⁸ anbi ¹²⁰ donation ⁵¹¹⁰ association ⁸⁵⁶² care ¹²³³⁸	The Hague → Scheveningen ¹⁶²⁵
stichtingbeatrixoord.nl	Fund for Revalidation and Against Tuberculosis	The foundation supports various projects aimed at improving the mobility and quality of life of people with physical disabilities, chronic illnesses, and tuberculosis. A specific project is highlighted: the development and validation of the ‘Cruiser 2.0’, a combined arm-leg ergometer, by the Department of Movement Sciences at the UMCG. In addition to projects, the foundation also supports events and initiatives, such as thematic meetings for patients with brain injuries, recreation and relaxation activities at the Beatrixoord Revalidation Center, and the ‘Dance on Prescription’ project for people with Parkinson’s disease.	Research → Scientific Research ²⁴³ Disease & Treatment → Chronic Diseases ¹¹⁶⁸	fund ¹⁰⁶³ reintegration ¹¹⁵⁷ mobility ¹²⁶⁴ rehabilitation ¹⁵¹²	Netherlands → Groningen ²³⁷³⁴
hetsikkelcelfonds.nl	The Sikkelcelfonds	The website provides information about sickle cell disease, patient stories, and scientific research into the disease. The Sikkelcelfonds supports various initiatives, including a documentary, a Nijntje campaign, and the support of international research such as the INTALESCE study. Donations and other forms of support, such as starting campaigns, volunteering, and legacies, are possible to fund research and raise awareness of the disease.	Disease & Treatment → Diseases ⁸²⁹	stem cell transplant ¹² nijntje ¹⁶ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
twinrun.nl	TAPS Support	The Twin Run is an annual event organized by TAPS Support, designed to highlight the complications associated with twin pregnancies. The event originated from an initiative by Mart Smit, who ran 150 kilometers in 2021 to raise funds for the LUMC, which provided care to his family during a complex monochorionic twin pregnancy. These funds supported a researcher, and this year, the Twin Run is focused on the Well Bee Study, which aims to map the mental burden experienced by these families, with the goal of reducing stress and improving quality of life.	Outdoor Activity → Running ¹⁸²⁹	tap ¹³⁵
donorkind.nl	Stichting Donorkind	The foundation organizes meetings between donor children and facilitates contact with other adult donor children to foster recognition and acknowledgement. Recently, the NVOG (Dutch Association of Gynecologists) has expressed a desire for fertility clinics to stop using foreign sperm. The website discusses topics such as the Law on the Provision of Gamete Donations, genetic mutations in children conceived through sperm donation, and recent news reports concerning donor conception, as well as Donor Awareness Day.	Women’s Health → Fertility ¹²⁵	donor ⁷⁵⁷ meetings ¹⁰¹¹ child ¹¹⁵⁶⁶	South-Holland → The Hague ¹⁹⁸⁹⁸
voorsara.nl	Stichting Voor Sara	The website offers various ways to help, such as participating in campaigns, becoming a partner, donating, or following the developments via the news. The Stichting Voor Sara foundation, supported by Rico Verhoeven, is working to stimulate scientific research and improve care for these patients. The foundation is committed to a healthier future for children and adults affected by rare muscle diseases, through milestones such as selling artwork.	Charities → Fundraising ¹⁰⁰⁵	fighter ²³ artwork ²²⁴⁸ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
stichtinglongcovid.nl	Long COVID Foundation	The website provides information about Long COVID, including the introduction, approach, and accountability of the foundation. Research focuses on identifying causes such as autoantibodies and inflammation in the nervous system, and is currently focused on 360 children. The foundation organizes campaigns, offers volunteer opportunities, and requests donations, with the aim of stimulating more research and increasing the visibility of Long COVID.	Animal Welfare → Animal Protection ¹⁷³	long covid ⁴² donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ volunteer ⁸³⁶⁷ research ⁸⁹⁶⁷
lexbak.nl	Lex Bak	The website describes the financial need for Lex's treatment, which requires €300,000, as €123,213 has already been donated. Sarina Bak has launched a crowdfunding campaign to cover the necessary medical costs and give Lex the best possible chance. The website presents an overview of previously organized benefit events and the developments surrounding Lex's illness, treatment, and family.	Social Issues & Welfare → Social Issues ¹⁸⁵⁴⁴	money ⁵⁸² cancer ⁶³¹ donation ⁵¹¹⁰ family ⁶⁴⁶² treatment ²¹²⁰³ event ⁴⁵¹⁹⁹
stichtingijzersterk.nl	Stichting IJzersterk	The foundation provides information about the various forms of NBIA, such as PKAN, MPAN, BPAN and CoPAN, as well as ongoing scientific research. Recently, Elene Vroegindeweij defended her dissertation on aceruloplasminemia at the Erasmus University in Rotterdam, where she conducted research on the role of iron in neurodegeneration. Stichting IJzersterk organizes events, such as a patient day at the University Medical Center Groningen, and is committed to peer support and sharing experiences.	Patient Services & Rights → Patient Information ¹⁵⁸	iron ²³⁷ diagnosis ¹⁴⁹⁰ patient ⁴⁰⁸² research ⁸⁹⁶⁷
astmabestrijding.nl	Stichting Astma Bestrijding	The foundation offers subsidies for small-scale scientific research projects focused on asthma and COPD. A prize is awarded to young researchers who have conducted research in the Netherlands or abroad on the subject of asthma. The website contains information about the composition of the board, the ANBI status, and links to relevant pages, as well as contact details.	Respiratory Diseases → Asthma ²⁷	asthma ⁵⁸ copd ⁵⁹ award ⁶⁴² subsidy ²⁶⁴⁹ board ³⁴³⁸ research ⁸⁹⁶⁷	North-Holland → Amsterdam ⁴¹²⁵³
jaapswierengastichting.nl	Prof. dr. Jaap Swierenga Stichting	The foundation offers awards, including the NRS Swierenga Penning and Thesis Award, which are awarded to individuals with outstanding achievements in lung research. A Longfonds-Swierenga Grant is available for research into rare lung diseases, in collaboration with Longfonds. The foundation provides information about its goals, board, financial support, and contact options.	Disease & Treatment → Medicine ¹⁰¹⁷	lung ²⁰ grant ¹⁰² award ⁶⁴² foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
kaisz.nl	Stichting KAISZ	The foundation has launched a new podcast trilogy about autoinflammatory diseases, as well as a digital database where users can find information about their illness. Stichting KAISZ collaborates with the Dutch Society for Paediatric Rheumatology (NVKR) and the Interuniversity Working Group on Autoinflammatory Diseases (IWA) to ensure the information provided is medically accurate and up-to-date. The foundation is a national organization with a small board of directors that works closely together and encourages the involvement of volunteers and donors.	Monuments → Cultural Heritage ⁵¹⁴	database ¹¹⁵³ podcast ³³²⁸ foundation ⁶⁶⁷⁸
mpn-stichting.nl	MPN Stichting	The website contains extensive information about MPN, its symptoms, diagnosis, and potential consequences. MPN World is a social network for MPN patients, providing a safe and accessible environment for contact and sharing experiences. The website offers a newsletter with updates, tips, and medical developments related to MPN.		pv ¹⁰ newsletter ⁶⁵⁰⁴
levenmetfahr.nl	Author	The website offers an overview of the rare neurological disorder Fahr's disease, characterized by calcium deposits in the brain and various motor and cognitive problems. The author emphasizes the scarcity of available information about the disease, as there are few online resources and only one specific patient association in the Netherlands. There is hope for a future study by UMC Utrecht into the disease and possible medication, which is a promising development.	Personal Stories → Illness Stories ¹³	disease ²⁸⁵ brain ⁴⁸¹ symptoms ⁵⁵⁸ study ⁷²⁰
stichtingfns.nl	Stichting FNS	The foundation was established in 2016 to provide better care for patients with FNS, where scans show no structural abnormalities but a functional problem of the nervous system is present. The website contains information about FNS symptoms, such as paralysis, pain, and seizure-like attacks, and emphasizes that the problem lies in the software of the nervous system, not the hardware. In addition to information, they offer webinars and a tool to find practitioners and solicit donations.	Anatomy & Systems → Neurology ¹³⁴⁰	symptoms ⁵⁵⁸ webinar ⁸⁷⁰ donation ⁵¹¹⁰
adifferentstory.nl	A DIFFERENT STORY Stichting	The organization aims to build community and break down barriers for marginalized children and their caregivers. They provide various services including parent support groups, community spaces, and international efforts to improve the lives of families affected by rare diseases. The website highlights the prevalence of rare diseases in the Netherlands (over 1.2 million people) and the organization’s commitment to assisting families navigating the challenges associated with caring for children with intensive needs.	Social Services → Family Support ³⁸⁰	caregiver ¹¹⁶⁷ family ⁶⁴⁶² community ⁷⁹³¹ workshop ¹⁹³²⁵ event ⁴⁵¹⁹⁹	North-Holland → Amsterdam ⁴¹²⁵³
stichtingveteranenziekte.nl	Stichting Veteranenziekte	The foundation was established following the largest legionella outbreak in the world in 1999 and aims to provide information and facilitate contact. Veteran's Disease (Legionnaires' Disease), a rare and life-threatening lung infection caused by legionella bacteria, is addressed by the foundation. The foundation is founded by experienced individuals and supported by relatives and medical advisors, with a voluntary commitment to people with veteran's disease and legionella infection.	Organizations → Society ⁷⁶⁷	relatives ²⁷ peer support ⁶⁸ legionella ⁷³ foundation ⁶⁶⁷⁸
oivereniging.nl	Osteogenesis Imperfecta Association	Osteogenesis Imperfecta (OI) is a rare, congenital and hereditary bone disorder characterized by fragile bones. The website offers information on OI, including advice, resources, and medical aspects such as surgeries and dental care. The organization provides various services, such as an SOS page for emergencies, volunteer opportunities, and the possibility of donations and membership, with information on their finances and contact details.	Social Organization → Patient Organizations ²⁵⁹	help ⁸⁶⁴ volunteer ⁸³⁶⁷
belangengroepmen.nl	Belangengroep MEN	The website provides information on MEN Type 1 and Type 2, covering topics such as genetics, fatigue, work and income, sports and rehabilitation, and psychosocial support. Information is available regarding potential treatments, including cancer treatments, and practical information for people with MEN who are traveling or coping with the effects of the disease. The website offers an overview of the organization, its goals, the board of directors, and recent news, including information about the youth day in Woerden.	Medicine → Oncology ²³⁰	syndrome ²¹ man ⁴⁵³ membership ¹⁰⁴⁴² care ¹²³³⁸ news ¹⁵²⁹³ event ⁴⁵¹⁹⁹
angiooedeemvereniging.nl	Angioedema Association	The website provides information about HAE, AAE, and AE/QE, and the challenges associated with these conditions. The association focuses on patients and relatives with hereditary or acquired angioedema and strives to improve their quality of life. The website contains news, events, contact information, and information about membership.		association ⁸⁵⁶² membership ¹⁰⁴⁴² news ¹⁵²⁹³
optimalezorg-dapperedokters.nl	Optimale Zorg – Dappere Dokters	The Optimale Zorg – Dappere Dokters movement focuses on preventing over-treatment and overdiagnosis. The movement organizes various projects and activities to integrate this mindset into practice, including workshops and debates. The movement emphasizes the importance of open dialogue between doctors, patients, insurers, and policymakers regarding which treatments truly add value to the patient's life.	Medical Care & Services → Patient Services & Rights ³⁵⁸	disease ²⁸⁵ doctor ¹³⁹⁷ patient ⁴⁰⁸² care ¹²³³⁸ collaboration ¹⁶⁰³⁶ treatment ²¹²⁰³	Bloemendaal → Overveen ⁴¹⁴
itp-pv.nl	ITP Patient Association Netherlands	The site offers information about the causes, diagnosis, treatments, and latest developments in ITP. Peer support meetings are also organized, and there is an overview of planned activities and news. The website contains an explanation of what ITP is, including a description of the disease and the function of platelets.	Social Organization → Patient Organizations ²⁵⁹	news ¹⁵²⁹³ treatment ²¹²⁰³
noordzeeziekte.nl	Stichting Noordzeeziekte	The foundation was founded in 2016 by Renske Wassenaar, inspired by her daughter Luna, who suffers from North Sea Disease and is treated at the University Medical Center Groningen (UMCG). The foundation organized the Slachte marathon to raise funds for research into North Sea Disease, resulting in an amount of €18,000. Research into the disease is being funded by a subsidy from the Hersenstichting (Brain Foundation), focusing on the application of Prime editing technology for potential treatments.	Research → Medical Research ³⁸⁴	subsidy ²⁶⁴⁹ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷	Netherlands → Groningen ²³⁷³⁴
hme-mo.nl	HME-MO vereniging Nederland	HME-MO is a rare genetic condition affecting approximately 1 in 50,000 people, with approximately 1000 people in the Netherlands living with the condition. The presentation of HME-MO varies significantly, ranging from mild cases with few osteochondroms and minimal complaints to severe cases with numerous osteochondroms, growths, and significant pain and/or mobility problems. The website provides information on the condition, treatments, genetics, scientific research, activities of the association, its history and goals, and options for becoming a member or donating.	Social Organization → Patient Organizations ²⁵⁹	mobility ¹²⁶⁴ pain ¹⁹¹⁹ research ⁸⁹⁶⁷ member ¹⁰¹⁵⁴
histio.nl	Histiocytose Nederland	The website contains information about the different forms of LCH, the relationship between LCH and diabetes insipidus, and the symptoms and treatments of the diseases. The organization offers opportunities for peer support contact via telephone, email, and a private Facebook group, and organizes an annual peer support day. Histiocytose Nederland is run entirely by volunteers and relies on donations to continue its activities, with the Fonds PGO being a key funder.	Social Organization → Patient Organizations ²⁵⁹	facebook ⁸⁵⁰ brochure ¹⁶⁴² donation ⁵¹¹⁰
hersenvrienden.nl	The Stichting Vrienden van het Herseninstituut	The website describes the activities of the Stichting Vrienden van het Herseninstituut, which is committed to promoting fundamental brain research by the Dutch Brain Institute and the Brain Bank. The site presents various research projects, including studies on Alzheimer's disease, Multiple Sclerosis, depression, sleep disorders, Parkinson's disease, and other neurological conditions. The website offers opportunities to donate, make bequests, donate, or provide corporate support, and emphasizes the impact of funding by directly channeling it towards research.	Neurology → Brain ⁵³	researcher ²²⁰ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸
fabry.nl	FSIGN	The site contains patient information, care pathways, news, and articles about the disease, including information on biological medications and diagnosis. FSIGN offers patients, upon starting enzyme replacement therapy, the opportunity to obtain a standard infusion in loan and organizes events such as the FSIGN women's/men's day. The website also addresses the ‘Rare Disease Day’ and ‘3FM Serious Request’ events, which promote awareness of rare diseases.	Social Organization → Patient Organizations ²⁵⁹	gene ³⁶ enzyme ⁴⁰ disease ²⁸⁵ treatment ²¹²⁰³
cidpexpertisecentrum.nl	Spierziekten Centrum Nederland	The expertise center offers information on diagnostics, treatment, peer support, and research. Research is being conducted into the causes of CIDP, new treatments, and the variation of the disease course. The website contains information for patients and healthcare professionals, including an FAQ and links to scientific studies.		peer support ⁶⁸ diagnostics ⁶⁸⁷ research ⁸⁹⁶⁷ treatment ²¹²⁰³	Rotterdam → Center ³⁸²
dutchthyroid.nl	Dutch Thyroid Cancer Group	The DTCG works collaboratively with various specialisms, including surgery, endocrinology, and radiology, to analyze and improve thyroid cancer treatments. The organization hosts several meetings, such as symposia and congresses, to share knowledge and promote collaboration. The DTCG also provides a platform for developing and coordinating new projects related to thyroid pathology.	Social Organization → Patient Organizations ²⁵⁹	collaboration ¹⁶⁰³⁶ treatment ²¹²⁰³	North-Holland → Amsterdam ⁴¹²⁵³
zeldsamen.nl	ZeldSamen	The website facilitates connections between families facing similar challenges, fostering a supportive environment for sharing experiences and seeking guidance. It features blogs covering topics such as resilience, sensory processing, grief, and inherited genetic syndromes. ZeldSamen organizes family days, webinars, and other events to connect members and provide information.	Law → Family ²⁹⁰⁹	family day ⁴⁹ farm ²⁶²² network ¹¹¹²³ blog ¹³³⁹²	North-Brabant → Oirschot ⁹²⁹
pxe.nl	PXE Nederland	PXE is a rare disease affecting only a few hundred people in the Netherlands, making research funding difficult to obtain. The PXE Nederland foundation, located at the UMC Utrecht Expertisecentrum, raises money through donations and ongoing campaigns, such as stamp-collecting campaigns at supermarkets. The collected funds, with a goal of €210,000, aim to support the UMC Utrecht Expertisecentrum in their research into a treatment for PXE.	Charities → Fundraising ¹⁰⁰⁵	supermarket ⁴⁰⁶ fund ¹⁰⁶³ patient ⁴⁰⁸² donation ⁵¹¹⁰ research ⁸⁹⁶⁷
tjallinghroordastichting.nl	De Tjallingh Roorda Stichting	The foundation was established in 2000 and received a donation of €1000 from Amsterdam Grapes. The foundation’s objectives include promoting research and disseminating information about metabolic diseases and supporting children and their families. Furthermore, the foundation encourages exchanges in the fields of education, science, culture, and sports for young people aged 27 and younger.	Personal Stories → Illness Stories ¹³	exchange ²⁵³ disease ²⁸⁵ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷	North-Holland → Amsterdam ⁴¹²⁵³
stichtingdedrielichten.nl	Stichting De Drie Lichten	The foundation was founded in 1950 by the sisters Maria Kreunen Mees and Petronella Mees, who wanted to use their inherited fortune for good. The motivation for supporting medical scientific research included Petronella’s health issues, the death of Ita’s husband from the Spanish flu, and the difficult post-war circumstances in which the research was located. The foundation aims to support researchers so that their research is not hindered by financial reasons.	Research → Medical Research ³⁸⁴	sister ⁸⁶ researcher ²²⁰ subsidy ²⁶⁴⁹ board ³⁴³⁸ research ⁸⁹⁶⁷
cystinose.nl	Cystinose Group Netherlands and Flanders	The website contains information about the causes, symptoms, genetics, and treatment options for cystinosis. Various documents and articles are available about the disease, including presentations from specialists and scientific publications. The site also offers practical tips, brochures, and other supportive materials, such as an English brochure and a flyer about the cystinosis clinic.	Medical Care & Services → Pediatric & Child Health ²¹²¹	brochure ¹⁶⁴² video ⁶⁷¹⁴
twanfoundation.nl	Twan Foundation	The foundation was founded by Rutger Baas and Rianne Kranendonk, Twan's parents, who were born in September 2010. Twan received the diagnosis of Ataxia-Telangiectasia (A-T) at the age of two and a half, a rare and potentially life-threatening inherited condition. The website provides information about A-T, frequently asked questions, contact options, and opportunities to donate or sign up for the newsletter.	Social Services → Welfare ¹⁰⁰¹	diagnosis ¹⁴⁹⁰ donation ⁵¹¹⁰ family ⁶⁴⁶² newsletter ⁶⁵⁰⁴ foundation ⁶⁶⁷⁸	Utrecht → Veenendaal ²⁶⁴¹
helpannemarieweerleven.nl	Stichting Help Annemarie weer leven	Annemarie suffers from CCI/AAI, a debilitating disease causing instability in her spine and nerve overstimulation, leading to worsening symptoms. As a result, she is confined to a darkened, sensory-reduced room and her hobbies and social activities are severely limited. An operation in Barcelona is her only hope for survival, and the website serves to collect donations to finance this operation.	Fundraising → Crowdfunding ²²	spine ¹²⁵ operation ⁴⁸⁰ donation ⁵¹¹⁰
hoogewerff-fonds.nl	Stichting Hoogewerff-Fonds	The foundation was established to promote innovation and manages a legacy from Ir. J.H. de Vlieger. The website contains information about subsidy applications, activities, and awards received, such as the Golden Medal and the Stimulation Prize. There is a list of past laureates of various prizes, including the names of professors, researchers, and engineers awarded between 1930 and 2022.	Higher Education → Professors ¹⁴	legacy ⁹¹ award ⁶⁴² subsidy ²⁶⁴⁹ board ³⁴³⁸ foundation ⁶⁶⁷⁸
stichtingziektevanpompe.nl	Stichting Ziekte van Pompe	The foundation raises funds to stimulate research and improve the quality of life for patients. The foundation provides support to patients and their families and organizes events and activities to raise awareness. The foundation publishes annual reports and reports and has an ANBI status and CBF label.	Diseases → Neurological Diseases ²¹	board ³⁴³⁸ patient ⁴⁰⁸² donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
albinisme.nl	N.V.	The site offers information on the history, general aspects, and social implications of albinism, including various forms and genetic aspects. There is a focus on the experiences of individuals with albinism, through personal stories and a forum, as well as practical tips and information for parents. Additionally, the website features a blog and a forum for discussion and support, aimed at all involved parties.	Social Issues → Participation ¹⁰²³	genetics ¹⁰⁴ eye ¹⁰⁷ forum ¹³⁶² history ⁷²⁸⁶ story ⁸²⁸⁵
historischegeografie.nl	Stichting Netwerk Historisch Cultuurlandschap	The NHC organizes regular meetings, including a network day, a summer afternoon, and a winter afternoon. Participation in the network is free and requires registration via a form on the website. The foundation is managed by a team of people, including Hans Renes (✝) as a former chairman and Jeroen Zomer as treasurer.	Monuments → Cultural Heritage ⁵¹⁴	cultural landscape ¹⁸ researcher ²²⁰ meetings ¹⁰¹¹ board ³⁴³⁸ network ¹¹¹²³	Utrecht → Amersfoort ⁸⁰¹¹
sca1research.nl	SpinoCerebellaire Ataxie type 1 Research Team	The website provides information about the disease itself and about two different research studies focused on the treatment of SCA1. Visitors can also view the team members involved in the studies and find updates on the research through news articles. A contact form allows users to directly contact the researchers.	Research → Medical Research ³⁸⁴	team members ⁶⁸ contact form ²⁷⁰ research ⁸⁹⁶⁷ news ¹⁵²⁹³
stichtingrrp.nl	Stichting RRP	The foundation is founded and run by patients with RRP and offers information, support, and a platform for stories. The website provides information about the disease, links to relevant websites and social media, and an agenda with information afternoons in various cities. The site includes personal stories from patients and their families, and offers links to research, studies and the Amsterdam UMC as an expert center.	Child Welfare → International Child Aid ¹⁴⁹	donation ⁵¹¹⁰ story ⁸²⁸⁵	Utrecht → Amersfoort ⁸⁰¹¹
jaspervalentijnfoundation.nl	Jasper Valentijn Foundation	The foundation specifically researches a medication or treatment method against INAD. Annual reports are available for the years 2022, 2023 and 2024, as well as a policy plan from 2015-2017. The website provides information on events, news, and the possibility of volunteering, and includes social media posts from the foundation.	Charities → Fundraising ¹⁰⁰⁵	annual report ⁸⁷⁷ foundation ⁶⁶⁷⁸ volunteer ⁸³⁶⁷ research ⁸⁹⁶⁷
uitlegalk.nl	StroomZ	The website contains explanations of ALK, including various models and therapies such as the biopsychosocial model, the consequences model, Acceptance and Commitment therapy, and solution-focused therapy, to help patients understand the disease. Training materials and educational resources are also offered to healthcare professionals, and materials are available for use in the consultation room to support conversations with patients. The website is based on research, with a recent publication detailing the application of the sensitization explanatory model in ALK patients in general practice and positive feedback from healthcare providers regarding the developed materials.	Medical Care & Services → Primary Care ⁵⁶⁹⁹	healthcare provider ⁴⁷⁴ conversation ¹⁸²⁸ model ³⁵⁴⁶ patient ⁴⁰⁸²
zeldzaamziek.nl	Stichting Zeldzaam Ziek	The foundation advocates for patients with rare diseases, fights for inclusivity in care and society, and seeks to raise awareness of the various aspects of living with such a disease. In September 2022, the foundation will launch a presence on social media (Facebook and Instagram) to collect personal stories. A book of interviews with patients and doctors about rare and chronic diseases is in preparation and is expected to be released in the summer of 2022.	Social Organization → Patient Organizations ²⁵⁹	disease ²⁸⁵ patient ⁴⁰⁸² foundation ⁶⁶⁷⁸ story ⁸²⁸⁵ care ¹²³³⁸
cslbehring.nl	CSL Behring Nederland	CSL Behring Nederland is a part of CSL Behring, a global biotechnology leader specializing in therapies for rare and serious conditions. The company puts patients at the center and focuses on developing and delivering high-quality medicines via recombinant DNA technology and gene therapy, often derived from human plasma. The website provides information about CSL Behring’s global locations, the organization, the product portfolio, career opportunities, and the focus on conditions such as bleeding disorders and immunodeficiencies.		disease ²⁸⁵ patient ⁴⁰⁸² research ⁸⁹⁶⁷
stichting-walk-on.nl	Stichting Walk On	The foundation is working to make exoskeletons available, which can help to improve the mobility of people with spinal cord injuries. The cost of an exoskeleton is high, and insurance reimbursement is currently lacking. Stichting Walk On was founded in 2016 and focuses on research into spinal cord injuries, alleviating symptoms, and developing solutions for a more active life. The foundation requests donations through a bank account or donation button, to finance the purchase of more exoskeletons.	Rehabilitation → Neurological Rehabilitation ²⁶	exoskeleton ¹² spinal cord injury ¹² donation ⁵¹¹⁰ health ⁶³⁶⁶ research ⁸⁹⁶⁷
airforall.nl	Stichting Air for All	The foundation was created from personal experiences of individuals living with Cystic Fibrosis, who understand the daily struggle for breathing space. The foundation is committed to scientific research, better treatments, and increased awareness of the disease, as science makes progress but more research is needed. In collaboration with the Dutch CF Foundation (NCFS), Stichting Air for All ensures that donations are effectively used to combat the disease.	Animal Welfare → Animal Protection ¹⁷³	awareness ¹⁷³⁵ research ⁸⁹⁶⁷ collaboration ¹⁶⁰³⁶ treatment ²¹²⁰³
kinderph.nl	National Expertise Center for Children with PH	The center was established to offer the best possible care for children with Pulmonary Hypertension, originating from across the Netherlands. Through collaboration with the Network of Children with PH and its location in the UMCG, the center has access to the necessary facilities and specialized knowledge. The center functions as a knowledge center and aims to share its expertise with patients, parents, referrers, and other stakeholders.	Medical Care & Services → Pediatric & Child Health ²¹²¹	ph ¹⁵ umcg ²⁵ center ¹¹¹⁵ care ¹²³³⁸	Zaanstad → Zaandam ²⁷⁴⁰
golfenvoortim.nl	Tim Foundation	The Tim Foundation collects money to support research and projects aimed at developing medications and treatments for energy metabolic diseases. Each week, 1 to 2 children are born with an energy metabolic disease, a rare condition for which there is currently no medication. The Tim Foundation is committed to raising as much money as possible to support research. A first trial with the intended medication on the first patients has started, but expanding these trials and developing the medication requires much time and money.	Neurology → Multiple Sclerosis ⁶⁴	disease ²⁸⁵ medication ¹¹⁶⁴ donation ⁵¹¹⁰ research ⁸⁹⁶⁷ energy ⁹⁰⁷⁵ collaboration ¹⁶⁰³⁶
energy4finn.nl	Stichting Energy4Finn	The foundation collects funds for medication development, as there currently is no treatment for severely ill children. Energy metabolic disorders frequently occur, even mild forms requiring significant exertion. The website organizes events to raise money and map out the activities of the foundation.	Charities → Fundraising ¹⁰⁰⁵	medical ²¹⁶ disease ²⁸⁵ donation ⁵¹¹⁰ research ⁸⁹⁶⁷ energy ⁹⁰⁷⁵ event ⁴⁵¹⁹⁹
fuckingcic.nl	Stichting F*CKING CIC	The website presents the story of Niki, a patient who has been diagnosed with this rare form of cancer and describes the impact of the illness and treatment. F*cking CIC organizes various activities and initiatives throughout the year to raise money for the Radboud Oncologie Fonds, specifically aimed at research into CIC DUX4. The website offers a podcast in which Eli, Niki's husband, talks to family and friends to illustrate the impact of a cancer diagnosis.	Diseases → Cancer ⁵⁴⁶	cancer ⁶³¹ podcast ³³²⁸ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
expertiseconsultatie.nl	Stichting Expertiseconsultatieportaal	The ECP is a secure online environment that allows healthcare professionals to collaborate, share expertise, and integrate patient experiences. The portal supports the declaration of expert advice according to the regulations of the NZa, and was developed in collaboration with patient organizations and medical specialists. ECZAs can adapt the portal to provide expert advice, tailored to their specific network, planning, and rare diseases in which they specialize, with practical support in the care pathway and financial processing.	Medical Care & Services → Digital & Telehealth ⁷⁹⁹	portal ⁵⁹¹ consulting ³⁶³⁹ patient ⁴⁰⁸² network ¹¹¹²³ care ¹²³³⁸
mastocytose.nl	Mastocytose Vereniging Nederland	The website offers information about mastocytosis, mast cells, diagnosis, treatment, and scientific research. It includes a glossary, animations, newsletters, and details about the annual patient day. Information is provided on the association's history, vision, goals, secretariat, and activities such as digital gatherings and peer support.	Social Organization → Patient Organizations ²⁵⁹	association ⁸⁵⁶² research ⁸⁹⁶⁷ member ¹⁰¹⁵⁴
stichtinghuidlymfoom.nl	Stichting Huidlymfoom	The website offers information about the disease cutaneous lymphooma, including the different types and treatment options. Patient experiences are shared, and contact is made with fellow patients. The foundation advocates for the interests of patients towards the healthcare sector and government.		patient ⁴⁰⁸² research ⁸⁹⁶⁷ care ¹²³³⁸ collaboration ¹⁶⁰³⁶
paragangliomen.nl	NVPG	The website contains information about paragangliomas, including their causes, symptoms, treatment methods, and heredity. It shares patient experiences and offers an online support group for those affected. The NVPG provides peer contact, a patient day and general member meetings, and advocates for the interests of patients, with expertise centers.	Social Organization → Patient Organizations ²⁵⁹	peer support ⁶⁸ association ⁸⁵⁶²
expertisezoeker.nl	Erfocentrum	The website contains a list of approximately 350 centers of expertise for rare diseases (ECZA) in the Netherlands, designated by the Ministry of Health, Welfare and Sports (VWS). Users can search based on the name of the disease to find a relevant center. The site is currently working on updating the data. The website is based on data from Inserm Orphanet and is developed by the Erfocentrum, funded by various organizations including the NFU and VWS.		rare disease ¹² search ¹⁰²⁷
rare-nl.nl	RARE-NL	Rare diseases affect over 36 million people in Europe, and adequate treatment is often lacking. The development of innovative therapies, such as RNA technology or drug repurposing, often stalls due to complexity, small patient groups, and high costs. To overcome these obstacles, collaboration between companies, researchers, government, and society is crucial, with a focus on societal valorization. This is necessary for sustainable solutions. RARE-NL facilitates this collaboration through a knowledge base, events, and the promotion of business cases focused on innovation and affordability.	Personal Stories → Illness Stories ¹³	disease ²⁸⁵ innovation ⁴⁶⁵⁹ therapy ⁷⁴⁴⁸ research ⁸⁹⁶⁷ collaboration ¹⁶⁰³⁶	Netherlands → Utrecht ⁴⁸⁹⁰¹
cmympn.nl	cmyMPN	The website offers comprehensive information on the diseases ET, PV, and MF, including causes, symptoms, treatments, and side effects. cmyMPN provides tools such as a personal health environment (PGO) and a forum, and facilitates communication with treating physicians. The site also includes information about cmyVitaLog, a digital tool for tracking symptoms and a news section with relevant articles.		pv ¹⁰ care ¹²³³⁸
ciapexpertisecentrum.nl	Spierziekten Centrum Nederland	The expert center offers expert advice on the treatment of CIAP and is working on the development of optimal diagnostics and care. The website contains information about the symptoms, disease presentation, and disease course of CIAP. Scientific research is being conducted into the causes of CIAP, possible treatments, and the role of factors such as gluten-related antibodies and statins.	Medicine → Oncology ²³⁰	healthcare provider ⁴⁷⁴ diagnostics ⁶⁸⁷ patient ⁴⁰⁸² research ⁸⁹⁶⁷ treatment ²¹²⁰³	Netherlands → Utrecht ⁴⁸⁹⁰¹
xlh-vereniging.nl	XLH Vereniging Nederland	The association strives for better care, more research, and serves as a partner for various organizations, including healthcare providers and pharmaceutical companies. The XLH Vereniging Nederland is a fully volunteer organization, relying on membership fees and donations, with the goal of applying for subsidies in the future. The website offers information about XLH, member stories, interviews, news, contact options, and membership opportunities.	Social Organization → Patient Organizations ²⁵⁹	patient ⁴⁰⁸² donation ⁵¹¹⁰ research ⁸⁹⁶⁷ membership ¹⁰⁴⁴² news ¹⁵²⁹³
rownederland.nl	Stichting ROW/HHT Nederland	The disease of Rendu-Osler-Weber (ROW), also known as Hereditary Hemorrhagic Teleangiectasia (HHT), is a rare inherited disorder that causes abnormal connections between arteries and veins, frequently affecting locations such as the nose, gastrointestinal tract, lungs, brain, and liver, and affects 1 in 5,000 people worldwide. The website organizes regular events, such as the Lotgenotendag (Fellowship Day) on October 18, 2023, and the HHT Europe meeting in Leiden on November 4-5, 2023, to connect fellow patients and provide information about the disease and the latest developments in treatment. The foundation facilitates contact between fellow patients and their relatives, and brings together patients, doctors, and scientists to stimulate scientific research into ROW and ultimately improve the quality of life for patients.	Social Organization → Patient Organizations ²⁵⁹	rowing ²⁴³ patient ⁴⁰⁸² research ⁸⁹⁶⁷ event ⁴⁵¹⁹⁹	South-Holland → Leiden ⁷⁰⁸⁹
dolls-house.nl	Stichting Poppenhuizen voor Mito Onderzoek	The website includes various sections, such as a menu, about us, an overview of architects involved in the project, an auction, a donation page, and news updates. A key part of the website is information on mitochondrial disorders (mito), which explains what the condition is, its impact on children, and the need for research into a treatment. The website aims to support children and adults affected by this rare and life-threatening condition and organizes activities like an auction and donations.	Shopping → Hobbies ⁵²³⁴	dollhouse ⁸⁶ architect ⁶⁰⁹ donation ⁵¹¹⁰ research ⁸⁹⁶⁷ news ¹⁵²⁹³
gnao1.nl	GNAO1 Foundation	The website provides information about the GNAO1 genetic disorder, its effects on physical and mental development, and current research findings. Stories from patients and families are shared, and information about GNAO1 conferences and publications is available. The GNAO1 Foundation encourages donations and offers opportunities to sponsor individuals participating in sporting events or to place donation boxes.	Charities → Fundraising ¹⁰⁰⁵	card set ²⁴ mutation ²⁷ donation ⁵¹¹⁰ research ⁸⁹⁶⁷ event ⁴⁵¹⁹⁹
stichtingkabukisyndroom.nl	Stichting Kabuki Syndroom	The website provides information about the Kabuki syndrome, including an A-Z overview, research, and an overview of studies. Various ways to help are offered, such as donating, recurring gifts, legacies, starting campaigns, and becoming a friend of the foundation. The foundation organizes various activities such as the Kabuki Mile, the Kabuki Cafe, and the Family Day, which are aimed at strengthening experiences and sharing knowledge.	Social Organization → Patient Organizations ²⁵⁹	donate ⁷⁷ foundation ⁶⁶⁷⁸
care4bones.nl	Care4Bones	The platform emphasizes the crucial role of collaboration in sharing experiences and knowledge between patients with various rare bone disorders, particularly those with Osteogenesis Imperfecta (OI). Collaboration strengthens the community, leading to a greater impact on policy-making, research funding, and the development of new treatments, with partnerships with organizations like ERN BOND in Europe and BBDC in the United States. The platform promotes the sharing of resources and expertise, which facilitates the organization of events, the creation of educational materials, and the provision of relevant information.	Municipalities → Policy ⁶⁰⁷	patient organization ¹⁶ collaboration ¹⁶⁰³⁶
smilevooricell.nl	Smile for I-Cell	The website contains information about I-Cell Disease / Mucolipidose 2, a rare inherited metabolic disorder. It tells the story of Liam, a boy with this disease, and how his parents and he cope with it. The website features a blog and photo gallery, and a donation button to support research into the disease.	Personal → Personal Stories ¹⁰²⁷	disease ²⁸⁵ family ⁶⁴⁶² research ⁸⁹⁶⁷
copdhuis-jan.nl	COPD Huis JAN	The initiative is supported by various pulmonologists from renowned hospitals, including the Haga Ziekenhuis, the Erasmus MC, the Wilhelmina Ziekenhuis, the Antoni van Leeuwenhoek Ziekenhuis, the Máxima Medisch Centrum, and the Franciscus Gasthuis. The website highlights the challenges faced by COPD patients and their caregivers, such as long waiting times, lack of understanding, and caregiver overload. COPD Huis JAN seeks to be a ‘missing link’ in existing COPD care and strives to offer a solution for the specific needs of this patient group.	Respiratory Diseases → COPD ²⁸	copd ⁵⁹ healthcare provider ⁴⁷⁴ caregiver ¹¹⁶⁷ patient ⁴⁰⁸² care ¹²³³⁸	North-Holland → Haarlem ⁸⁶⁷⁴
ikvindjeliefpapa.nl	Foundation	The blog describes the experiences of the father, mother, and their daughter Em, who was born in 2012 and received the diagnosis of Smith-Magenis Syndrome in late 2016. The content includes personal stories, anecdotes, and experiences with the challenges and emotions associated with the syndrome. The blog discusses topics such as the need for special education, difficulty with emotions, and the significance of small moments of connection, such as the words ‘I love you, Dad!’	Family → Children ²⁷⁹⁸	em ¹² blog ¹³³⁹²
liberatelife.nl	Sobi	The website describes the ‘Liberate Life’ vision as an effort to fundamentally change the lives of people with rare diseases and offer them new opportunities. Various categories are offered, such as ‘Living with Hemophilia,’ targeting parents, young adults, and older adults with the disease, and a section with frequently asked questions. The website introduces a group of people called ‘Liberators’ (Arni, Erik, Hans, Jose Antonio, Paola) who support Sobi’s vision.	Social Organization → Patient Organizations ²⁵⁹	opportunity ⁵⁸¹ dream ⁸⁸³
zeldzameaandoening.nl	VSOP	The website serves as an access point to reliable websites related to 12 different themes, including hereditary diseases and diagnosis. The website connects European policy for rare diseases with the organization of care in the Netherlands, and guides users through various themes and links to relevant information. The website provides access to information from the 24 European Reference Networks and the activities of European patient representatives, with the goal of informing and supporting Dutch patient organizations.	Social Organization → Patient Organizations ²⁵⁹	rare disease ¹² theme ⁴⁰¹⁵ network ¹¹¹²³ care ¹²³³⁸	Netherlands → Utrecht ⁴⁸⁹⁰¹
ecdhm2025.nl	ECDHM	The conference will be held from September 10-12, 2025, in Wijk aan Zee, Netherlands, at the Het Hoge Duin conference hotel, a short distance from Amsterdam. This year’s theme is ‘Sustainability in Donations,’ focusing on historical perspectives, current challenges, and future possibilities for donor health and management. Since its beginning in 2014, ECDHM has progressed significantly, overcoming a delay caused by the COVID-19 pandemic and emphasizing the importance of sustainable practices to maintain healthy and motivated donors.	Research → Medical Research ³⁸⁴	donor ⁷⁵⁷ conference ⁷⁶³ donation ⁵¹¹⁰ sustainability ¹⁸⁴⁵¹	Beverwijk → Wijk aan Zee ³⁶³
ahus.nl	Stichting aHUS Nederland	The foundation strives to ensure aHUS patients have access to the best available treatments, considering the challenges with reimbursement for expensive medications. The website was created with input from patients, parents, and medical experts from the Radboud UMC Rare Kidney Diseases Expertise Center, in collaboration with the Dutch Kidney Patient Association. Donations received by aHUS Netherlands are used exclusively to cover the direct costs of its activities and are managed independently.	Charities → Fundraising ¹⁰⁰⁵	medical ²¹⁶ patient ⁴⁰⁸² donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ treatment ²¹²⁰³
flevolandsepatientenfederatie.nl	Flevolandse Patiëntenfederatie	The organization supports the setup of resilient neighborhoods, particularly in Almere, through the Positief Gezond Almere transformation plan. Recently, a new board member, Marije de Bie, has been appointed and a board member, Johan Uijleman, has retired. The federation offers newsletters and provides information about collaboration in healthcare within the subregions of Flevoland.	Social Organization → Patient Organizations ²⁵⁹	patient organization ¹⁶ board ³⁴³⁸ newsletter ⁶⁵⁰⁴ collaboration ¹⁶⁰³⁶	Flevoland → Lelystad ³¹⁸⁰
stichtingwakkerwordenwakkerworden.nl	Stichting Wakker Worden	The foundation emphasizes the importance of sleeping well, but not everyone is able to do so effectively. The website introduces ambassadors, such as Jochem Myjer and Sandra Pipping, who share their experiences with narcolepsy. The site provides information about narcolepsy, including an animation and stories from ambassadors, and encourages visitors to donate.	Charities → Fundraising ¹⁰⁰⁵	ambassador ²¹³ animation ¹⁷⁷⁷ story ⁸²⁸⁵
kwaliteitvoorzeldzaam.nl	VSOP	VSOP functions as a coordinating organization that monitors and promotes quality standards in healthcare for rare and/or genetic disorders. The website provides models for care networks and individual care plans that can be used to improve the quality of care. VSOP offers support to patient organizations and healthcare providers via telephone and email, including practical assistance and active guidance for projects.	Social Organization → Patient Organizations ²⁵⁹	rare disease ¹² care network ¹³
haroldvanzundert.nl	Harold van Zundert Stichting	The foundation specifically focuses on children whose parents have passed away. They organize various activities, such as outings to amusement parks, zoos, cinemas, circuses, theaters, playgrounds, and swimming paradises. The foundation is also open to donations and has a Facebook page for sharing news and activities.	Stories → Travel Blogs ¹⁰¹⁶	memory ¹⁶⁴¹ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ child ¹¹⁵⁶⁶	Katwijk → Katwijk-North ²⁴
stichtingmcs.nl	Stichting MCS	MCS develops from reactions to low concentrations of everyday chemicals and odors, leading to diverse and severe symptoms such as respiratory problems and digestive issues, affecting various organ systems. MCS is a complex condition that affects the immune system, detoxification system, hormonal system, and nervous system, causing patients often to struggle with food, medication, and even drinking water. The disease is considered an environmental illness, often occurring in industrialized countries and is comparable to OPS (Organic Psycho Syndrome) and EHS (Electromagnetic Field Sensitivity).	Anatomy & Systems → Specific Conditions ²⁰⁵	odor ⁸¹ chemicals ¹⁴¹ immune system ²⁶⁹
femkebruinsma.nl	Femke Bruinsma	The website contains photos of Femke from various periods of her life, from 0-20 years old, and photos from different locations, including Ameland, Huisduinen, Maastricht, Zandvoort, Paris and others. There are poems written for Femke Bruinsma, diaries from her illness period, and a memorial card. Personal memories are also shared. The site also provides information about Alpers syndrome, the metabolic disease that Femke was diagnosed with, as well as information about the fundraising campaigns and fundraising efforts organized to support research into this disease.	Personal → Personal Stories ¹⁰²⁷	illness ²²⁵ fundraising ³²² poem ¹⁰¹⁴ memory ¹⁶⁴¹ photo ⁷⁷⁷⁸ book ¹¹³⁹⁶	Oldebroek → 't Loo Oldebroek ⁴³
stichtinghetkomtgoed.nl	Stichting Het Komt Goed	The author tells the story of her brother Jelle, who was severely ill at the age of six due to a rare metabolic disease, ethylmalon encephalopathy. After a period of recovery, Jelle experienced symptoms again at the age of fifteen and ultimately passed away. The author herself also carried this disease, but with less severe symptoms. Following Jelle’s death, she underwent a liver transplant. Jelle’s death has helped the author gain perspective on the disease and use it to raise awareness about it.	Law → Family ²⁹⁰⁹	transplant ²³ brother ⁸³ disease ²⁸⁵ insights ⁹⁷⁶ health ⁶³⁶⁶ story ⁸²⁸⁵
med-sed.nl	Vereniging Med-Sed	The association aims to provide information, peer support, and advocate for the interests of patients with MED and SED. MED stands for Multiple Epiphyseal Dysplasia, and SED stands for Spondyloepiphyseal Dysplasia, both rare and inherited skeletal disorders. The association also encourages research and treatment of these conditions and refers to the expertise network for comprehensive medical information.	Social Organization → Patient Organizations ²⁵⁹	advocacy ³⁵⁷ association ⁸⁵⁶² research ⁸⁹⁶⁷
devoedingsbuddie.nl	The Voedingsbuddie	The website describes the activities of Jolien, an expert in challenging eating experiences, who writes stories and offers nutrition education and cooking workshops for children. The stories are used as inspiration and a way to share experiences, particularly for parents and caregivers of children with rare diseases, to provide them with strength and perspective. The Voedingsbuddie organizes various activities, including guest lectures, children's parties, and blogs, with an interactive and creative approach.	Knowledge → Education ⁶⁹⁶⁶⁶	guest lecture ⁴¹ cooking ⁸⁰¹ party ⁵⁹²⁸ story ⁸²⁸⁵ child ¹¹⁵⁶⁶
hartvoorcf.nl	Hart voor CF	The foundation originated as a private initiative and is dedicated to promoting contact between people with CF through the internet, as personal contact is often discouraged due to medical reasons. Hart voor CF is reliant on donations and grants to maintain its activities. The foundation organized activities, including a visit to Zeeland and the fulfillment of wishes, and recently received an award for Irène Reinaerts in Zwolle.	Disease & Treatment → Chronic Diseases ¹¹⁶⁸	donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸	Overijssel → Zwolle ⁷³⁹⁵
debasstichting.nl	The Bas Stichting	The website provides information about the foundation, its goals, research projects and activities. Information is provided about the disease juvenile dermatomyositis, different research methods (imaging, laboratory, MRS) and a training program. The website offers opportunities to donate, sponsor, volunteer and support the foundation through newsletters and campaigns such as the 'light-up campaign'.	Science → Medical Sciences ⁹⁷	research team ¹⁰ policy plan ¹¹⁴ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
just-breathe.nl	Just-Breathe	The website details Marco van Eliveld’s personal story, after being diagnosed with Hodgkin’s disease, pulmonary hypertension, and undergoing a double lung transplant, he established Just-Breathe. The goal is to raise awareness of pulmonary hypertension and the donor shortage, with the intention to educate and assist others. The website offers personal stories, tips, and emphasizes the importance of strength, resilience, and perseverance in dealing with illness and recovery.	Disease & Treatment → Diseases ⁸²⁹	strength ⁷⁸⁹
fondsstamceldonatie.nl	Matchis Fund Stem Cells Donation	The fund collects money for the registration of new stem cell donors, as this process involves costs. The website informs about the necessity of stem cell donation and its impact on patients with blood cancer, such as leukemia. The fund organizes events, such as the 4-Day Walk of Nijmegen, to raise awareness and collect funds.	Charities → Fundraising ¹⁰⁰⁵	leukemia ¹⁷ donor ⁷⁵⁷ donation ⁵¹¹⁰ event ⁴⁵¹⁹⁹
vriendenvanduchenne.nl	Vrienden van Duchenne	The website contains reports of past Duchenne Saté Parties, the Triathlon, and other activities. Participants and sponsors of the events are presented. The website publishes information about the financial proceeds of the activities, currently €731,212.15.	Charities → Fundraising ¹⁰⁰⁵	duchenne ²¹ proceeds ³⁴ triathlon ¹⁹³ sponsors ²⁶⁴² report ⁴⁵⁵¹ event ⁴⁵¹⁹⁹	Gelderland → Apeldoorn ⁶⁹⁹⁶
hebhartvoorlongen.nl	Stichting 'Heb hart voor longen	Pulmonary Hypertension is a condition that can lead to serious heart failure and is actively combatted by the foundation. The foundation collects funds, donations, and sponsorships to support medical and scientific research into PH, with the goal of enabling an early diagnosis. Visitors to the website can support the foundation by making a donation and can find information about the disease and the foundation's efforts.		donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
emre.nl	Stichting Emre	The story began with Emre Can, a young boy from Tilburg with a severe metabolic disease that caused developmental delays and spasticity. Initially, research was conducted by Prof. dr. Barth of the AMC, but due to the rarity of the disease, funding was initially unavailable. The research was later continued by Prof. dr. R.J.A. Wanders, and the foundation is now active in funding other research projects, including educational expenses for children abroad.	Medical Care & Services → Ophthalmology ⁹²	researcher ²²⁰ disease ²⁸⁵ fund ¹⁰⁶³ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷ child ¹¹⁵⁶⁶	North-Holland → Amsterdam ⁴¹²⁵³
pkskids.nl	Stichting PKS Kids Nederland	The website offers information about the rare syndrome, including medical aspects, treatment, and the experiences of other families. The platform facilitates the exchange of experiences, medical data, and participation in research, as well as emotional support and practical guidance. Furthermore, the foundation organizes events such as Family Days and awareness campaigns to increase awareness of PKS and create a supportive community.	Foundations → Healthcare Foundations ¹¹	parent ⁴³¹⁸ family ⁶⁴⁶² care ¹²³³⁸
conradi-hunermann.nl	Cindy Verhorst	The website originated from the author's personal experience with the Conradi-Hünermann syndrome. The author shares her knowledge and hopes to increase awareness of the disease. In addition to information, the website offers a platform for patients to connect with each other.		patient ⁴⁰⁸²
stichtingwalkingwithgiants.nl	Walking With Giants	The foundation focuses on individuals and families in the Netherlands and worldwide with various subtypes of primordial dwarfism, including PD Non Specific, Meier Gorlin Syndrome, MOPDI/III, and MOPDII. In addition to support, the foundation supports medical research into primordial dwarfism and other forms of extreme dwarfism, and works towards establishing a medical database. The website provides information about the condition of primordial dwarfism, donation opportunities, and contact details.	Research → Medical Research ³⁸⁴	donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸
allesoverhuntington.nl	Niet vermeld	The website focuses on providing information about Huntington’s disease, a hereditary neurological disorder. A key symptom of the disease is involuntary behavior, such as clumsiness, bumping into things, stumbling, and falling, which resembles dancing or drunkenness. The disease is caused by a defective gene on the 4th chromosome that affects the brain and can be passed down through heredity.	Anatomy & Systems → Neurology ¹³⁴⁰	gene ³⁶ brain ⁴⁸¹ symptoms ⁵⁵⁸ movement ²³⁰⁴
syndroomvanrett.nl	Syndroom van Rett	The website was created after the author's daughter was diagnosed with Rett syndrome in November 2019, and the diagnosis was subsequently corrected by the LUMC to a MeCP2-related mutation. The author acknowledges that the information on the website is based on online research and scientific studies, and cites sources where possible. The website emphasizes that it does not offer medical advice, diagnosis, or treatment, and encourages visitors to consult a qualified healthcare provider for medical questions.		diagnosis ¹⁴⁹⁰
huisartsendienstnederland.nl	Huisartsendienst Nederland	The website describes the organization Huisartsendienst Nederland and Stichting DCT, their vision and mission, as well as their core values. The organization is active in performing mobile diagnostics, particularly focusing on dexamethasone and ophthalmology. The Board of Directors and Advisory Board of the foundation consist of experts and doctors contributing to the service provision and quality management.	Health → Medical Care & Services ²⁹⁴⁶¹	diagnostics ⁶⁸⁷ vision ¹⁸⁸² patient ⁴⁰⁸² care ¹²³³⁸ appointment ¹³⁵¹⁰
st-groenewold.nl	Stichting ’t Groenewold	The foundation connects people and offers the opportunity to respond to messages. 't Groenewold has ANBI status and regularly publishes newsletters. The foundation organizes ‘Kom op de soep’ events in Venlo.	Software Development & Engineering → Blogs ¹⁹	conference ⁷⁶³ newsletter ⁶⁵⁰⁴ event ⁴⁵¹⁹⁹	Limburg → Venlo ⁴¹⁵⁸
bollenstreekfonds.nl	Bollenstreekfonds	The fund focuses on Team Livingstone at the LUMC and their research into a simple and reliable blood test for early detection of cancer. The goal is to increase the chances of early detection, leading to improved treatment outcomes for patients. Michelle Wijnhout, the founder of the fund, emphasizes the potential of early cancer detection through blood testing.	Community & Social → Social ¹⁵⁴	lumc ¹⁷ blood test ²⁰⁰ fundraising ³²² cancer ⁶³¹ research ⁸⁹⁶⁷
levenmetsarcoidose.nl	levenmetsarcoidose.nl	The blog describes the diagnosis of sarcoidosis and its impact on the author’s life. It contains personal stories about various aspects of living with sarcoidosis, including relapses, prednisone, tests, and re-integration. The author shares her experiences with the disease, her personal strategies, and the uncertainty that comes with it.	Personal → Personal Stories ¹⁰²⁷	lung ²⁰ tests ³¹⁵ blog ¹³³⁹²
designbot.nl	designbot.nl	Daan Schipper recounts his personal story about the development of Empty Nose Syndrome, starting with the first complaints in his nineteenth year and the impact on his social life, work, and hobbies. The website details the diagnosis of ‘Empty Nose Syndrome’ and the challenges Daan faces with this condition, including the varying complaints and the reduced quality of life. The story concludes with a crowdfunding campaign to finance a stem cell treatment in San Marino, emphasizing Daan's transparency regarding the diagnosis and treatment.	Personal Stories → Autobiography ²²²	crowdfunding ²⁴⁶ story ⁸²⁸⁵ treatment ²¹²⁰³	Oldambt → Nieuw Beerta ¹⁶
rickjonckheerefoundation.nl	Rick Jonckheere Foundation	Rick Jonckheere passed away unexpectedly from CVID, a rare disease, at the age of eighteen while studying drums at the Rock Academy of Fontys School of Arts and Sciences. He was a first-year drum student. The foundation was created by Rick’s parents, who noticed the need for more research into rare diseases because funding is often directed towards more well-known conditions. The foundation organizes campaigns and events to raise money for CVID research and to raise awareness of the disease, having now raised €86,759 to date.	Personal Stories → Illness Stories ¹³	disease ²⁸⁵ donation ⁵¹¹⁰ research ⁸⁹⁶⁷ event ⁴⁵¹⁹⁹	Tilburg → Old South ⁷²
stichtingacd.nl	Stichting ACD	The foundation was founded by Jessica and Mathijs, the parents of children who died from ACD, with the goal of supporting the fight against the condition and raising awareness. Run4ACD is an initiative by Mathijs, who runs marathons to raise money and draw attention to ACD. The website contains information about ACD, the history of the foundation, and personal stories from the founders and their family.	Charities → Fundraising ¹⁰⁰⁵	foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
psdresearch.nl	PSD Research Foundation	The organization conducts research and trials on sinus pilonidalis and organizes scientific symposia. It offers a patient platform for people with this condition. The website publishes scientific articles, such as studies on the etiology of sinus pilonidalis and various surgical strategies.	Science → Medical Science ²⁴	symposium ³³⁹ study ⁷²⁰ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
guepin-downstichting.nl	J.Th. Guepin Stichting Onderzoek Down Syndroom	The foundation was established by Mädi Guépin in 2013 after her career, to fulfill her wish to promote scientific research on Down Syndrome. Mädi Guépin, who dedicated her life to helping people with Down Syndrome, was appointed a Member of the Order of Orange-Nassau in 2005 for her social commitment. The foundation has published annual reports from 2016 to 2024, and provides information about its objectives, projects, finances, history, and contact details.		syndrome ²¹ board ³⁴³⁸ report ⁴⁵⁵¹ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷	Bloemendaal → Overveen ⁴¹⁴
stichtingheadstrong.nl	Stichting Headstrong!	The website provides information about Joany’s situation, including her diagnosis, the necessary surgeries, and her resilience. Stichting Headstrong! describes its goal: to provide support and awareness to patients with the same rare condition. The website includes a crowdfunding campaign to cover the cost of the surgeries, as well as updates, contact details, and a list of sponsors.	Charities → Fundraising ¹⁰⁰⁵	updates ²⁰⁰ surgery ³⁶⁵ awareness ¹⁷³⁵ donation ⁵¹¹⁰
stichtingrolina.nl	Stichting Rolina	In August 2023, a rare brain tumor was discovered in Rolina van der Ent, which typically has a fatal outcome, leading to shock and uncertainty. Following treatment with the experimental drug ONC201, developed by the Institut Gustave Roussy in Paris, the tumor has shown a significant reduction in size, astounding experienced Dutch doctors at Erasmus MC. Although the treatment is experimental and the drugs are not yet approved, ONC201 provides temporary relief to patients and expands scientific knowledge about the disease.	Research → Medical Research ³⁸⁴	tumor ⁵⁰ drugs ¹⁰⁵ disease ²⁸⁵ research ⁸⁹⁶⁷ treatment ²¹²⁰³
jeswecan.nl	Stichting JES WE CAN	The website features a blog where Jesse’s family and friends report on recent events, treatments, and developments. Blog posts cover the hectic year that has passed, including loss and a new beginning, the period after the loss of Ferry, and Jesse’s upcoming step towards independent living. The website also publishes news articles, including an obituary for Ferry Bongenaar, a board member of the foundation, and reports on Christmas events and their success.	Personal → Personal Stories ¹⁰²⁷	rehabilitation ¹⁵¹² family ⁶⁴⁶² foundation ⁶⁶⁷⁸ blog ¹³³⁹² news ¹⁵²⁹³
1op5.nl	Stichting 1 op 5	The foundation highlights that 1 in 5 new cancer patients receive a rare form of the disease, which is relatively common. They identify seven bottlenecks in the current care system, including long waiting times, limited treatment options, and a lack of reliable information. The foundation encourages donations to support research efforts and improvements in care for this group of patients.	Specialty Medicine → Cancer Care ⁹⁷	cancer ⁶³¹ patient ⁴⁰⁸² donation ⁵¹¹⁰ research ⁸⁹⁶⁷ care ¹²³³⁸
brabantacademie.nl	Brabant Academy	The academy facilitates collaboration between staff from these organizations, aiming to improve care for patients. It offers educational programs, scientific research, newsletters and symposiums on the relationship between practice and science in mental healthcare. The website contains information on recent events, such as conferences, webinars, and the extension of a professorship, as well as contact details.	Health → Mental & Emotional Well-Being ²³⁷⁰⁴	knowledge sharing ¹⁶² symposium ³³⁹ webinar ⁸⁷⁰ research ⁸⁹⁶⁷ education ¹³⁴⁷¹ collaboration ¹⁶⁰³⁶	North-Brabant → Tilburg ⁸⁷⁵⁹
levedeopruimers.nl	Leve de opruimers	The book describes the experiences of Pip and Teun with their metabolic disease and its impact on their lives. The website offers information about metabolic diseases, the book’s creators, and an audio version of the book. Visitors can order the book directly and are guaranteed a personal message with the story.	Books → Children’s Books ¹⁰⁴²	disease ²⁸⁵ story ⁸²⁸⁵ book ¹¹³⁹⁶ child ¹¹⁵⁶⁶
ptls.nl	Stichting PTLS Nederland	The website contains information about the symptoms, diagnosis, treatment, and experiences related to PTLS. It also provides links to relevant research, downloads, and financial aid programs, as well as information on education and therapy. The website includes a schedule of events such as webinars, family days, and conferences, and stories from individuals and families living with PTLS.	Family → Parents ⁵²⁵	webinar ⁸⁷⁰ diagnosis ¹⁴⁹⁰ foundation ⁶⁶⁷⁸
careforqualityoflife.nl	Care for Quality of Life Foundation	The foundation focuses on medical research and social impact projects to improve the lives of patients and their families. A key medical research project is the Approach Study of Kiddy Good pills, which focuses on the use of antibiotics in children with recurrent respiratory infections. The foundation also supports initiatives such as Muziek aan Bed, which helps sick children and elderly people find resilience.	Research → Medical Research ³⁸⁴	exoskeleton ¹² antibiotics ²⁹ research ⁸⁹⁶⁷ music ¹³¹⁷⁰
hersentumoronderzoekfonds.nl	Brain Tumor Research Fund	The website provides information about the necessity of brain tumor research, considering the disease's lethality and the relatively low funding level. The fund specializes in effectively utilizing available resources for innovative and promising research into the cure of brain tumors. The organization emphasizes international collaboration in research to maximize opportunities.	Cancer → Brain Tumors ¹¹	brain tumor ¹⁷ cure ²⁰ money ⁵⁸² research ⁸⁹⁶⁷ collaboration ¹⁶⁰³⁶
thinkimcd.nl	Think iMCD	The site offers diagnostic journeys, expert guidance on grading, exclusions, and subtypes of Castleman Disease, and outlines the process for diagnosing the condition. It includes a resource library with case studies, diagnostic guidelines, and frequently asked questions, aimed at facilitating informed decision-making throughout the diagnostic process. Furthermore, the website provides introductory material on CD/iMCD, including background information and a glossary of abbreviations, and encourages navigation based on user interest.		pathology ²¹
stopdekatwijkseziekte.nl	Dutch CAA Foundation and Vereniging HCHWA-D	The website is a collaboration between the Vereniging D-CAA, the Dutch CAA Foundation, and the LUMC, working together to find a treatment for the Katwijkse Ziekte. Various research studies are underway, including an interview study, a graduation research project, and DIST, all focused on improving care and support for families with the disease. The website offers information on participation requirements, frequently asked questions, and opportunities to donate or sign up for research.	Research → Medical Research ³⁸⁴	lumc ¹⁷ disease ²⁸⁵ participation ¹⁴³⁰ donation ⁵¹¹⁰ association ⁸⁵⁶² research ⁸⁹⁶⁷
kat6a.nl	Stichting KAT6A Syndroom Nederland	The website provides information about the syndrome’s effects and encourages people to remain positive despite the challenges. The foundation is active in promoting research, facilitating connections between those involved and professionals, and providing information and support to children, young people, adults, and their families. Donations are accepted to support the foundation’s mission and bring positive changes to the lives of people with the KAT6A syndrome.	Wellbeing → Child Well-Being ²⁸	donation ⁵¹¹⁰ research ⁸⁹⁶⁷
routetsc.nl	STSN	The website presents an infographic about TSC that explains the most common symptoms and their relationship to different life stages. It contains detailed information on specific symptoms, such as Angiofibromen, Epilepsy, and Subependymal Nodules, including their causes, consequences, and potential treatments. The site offers links to relevant scientific sources and a PDF with guidelines for doctors, and a support system for questions and answers about TSC.	Medical Care & Services → Pediatric & Child Health ²¹²¹	gene ³⁶ symptoms ⁵⁵⁸ treatment ²¹²⁰³
retinafonds.nl	Stichting Retina Fonds	The foundation provides accountability for its financial policies and informs visitors about recent medical developments. Each year, scientific projects are assessed and the foundation then makes available funding. The foundation encourages both scientific and ‘own’ research and asks visitors to donate.	Medical Care & Services → Ophthalmology ⁹²	donor ⁷⁵⁷ fund ¹⁰⁶³ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
1000kaarsjes.nl	Stichting 1000 kaarsjes voor Juultje	The foundation was established by Juultje’s mother, who received the diagnosis of Langerhans Cell Histiocytosis (LCH) as an infant and subsequently underwent a year of treatment. Langerhans Cell Histiocytosis (LCH) is a rare and life-threatening disease, the exact cause of which remains unknown, necessitating continued research. The foundation provides a platform for sharing experiences and news related to LCH and facilitates donations to support scientific study of the disease.	Animal Welfare → Animal Protection ¹⁷³	donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
leiomyosarcoom.nl	Voûte Digital	Leiomyosarcoma is a rare and aggressive tumor that develops in smooth muscle tissue and can grow deep within the body, often leading to a late diagnosis. The website offers comprehensive information on the causes, symptoms, diagnosis, treatment, and potential treatment methods of leiomyosarcoma. In addition to information about the disease, personal stories are shared, news about research is provided, and tips are given for coping with the practical and emotional consequences of leiomyosarcoma.	Diseases → Cancer ⁵⁴⁶	symptoms ⁵⁵⁸ diagnosis ¹⁴⁹⁰ patient ⁴⁰⁸² treatment ²¹²⁰³
cameraaperture.nl	Katherine Maguire	Katherine Maguire is a photographer diagnosed with POHS, which has impacted her vision and is documented through her work. The website features projects such as the ‘Brussels Weekend Wonder Walk,’ ‘Invisible part 2,’ and ‘Invisible Maastricht,’ among others, demonstrating her photographic style and creative exploration. Maguire is an ARPS (Associate Royal Photographic Society) member and is pursuing potential FRPS (Fellow Royal Photographic Society) status, highlighting her photographic expertise.	Artistic Expression → Fine Art Photography ⁵⁰²	vision ¹⁸⁸² photography ⁹⁵⁰³	North-Brabant → 's-Hertogenbosch ⁸⁸⁶⁸
tscfonds.nl	Stichting TSC Fonds	The foundation provides a solid basis for financial support of scientific research into Complex Tubereous Sclerosis. The foundation’s mission includes fostering collaboration and enthusiasm among researchers, as well as stimulating education and scientific meetings. Stichting TSC Fonds is a capital fund (ANBI) located in Amsterdam, Netherlands, aiming to achieve a world without Complex Tubereous Sclerosis.	Charities → Fundraising ¹⁰⁰⁵	fund ¹⁰⁶³ research ⁸⁹⁶⁷ education ¹³⁴⁷¹ collaboration ¹⁶⁰³⁶	North-Holland → Amsterdam ⁴¹²⁵³
zeldzamenvoorelkaar.nl	Zeldzamen voor Elkaar	The website provides information, support and volunteer opportunities for families with children who have rare diseases, emphasizing knowledge sharing and experiences. A key element of the website is the sharing of stories from families dealing with rare diseases, highlighting the need for support and understanding. The website promotes projects focused on raising awareness of rare diseases and providing practical assistance to the involved families.	Social Organization → Patient Organizations ²⁵⁹	rare disease ¹² family ⁶⁴⁶² story ⁸²⁸⁵ volunteer ⁸³⁶⁷
mijnlimburgshart.nl	Heart and Vascular Research Fund of Limburg	The website features a list of ambassadors, prominent Limburgers promoting the fund's mission. Mijn Limburgs Hart connects patients with doctors and each other, fostering informedness and peer support within the Heart+Vascular Center and Limburg partner hospitals. The website encourages financial donations and offers a contact form for questions and information about the fund's activities.	Disease & Treatment → Cardiovascular Diseases ⁹¹	ambassador ²¹³ contact form ²⁷⁰ fund ¹⁰⁶³ patient ⁴⁰⁸² donation ⁵¹¹⁰ research ⁸⁹⁶⁷	Limburg → Maastricht ⁶⁰⁰⁸
businessboxingfortaai.nl	Stichting TAAI Business Boxing	The foundation is committed to scientific research into Cystic Fibrosis, a rare and inherited disease that limits the life expectancy of patients. Stichting TAAI organizes various events, such as Golf4TAAI and DCFR2024, to raise funds and draw attention to Cystic Fibrosis. Business Boxing for TAAI is a new program that challenges entrepreneurs and managers to participate in boxing matches, with the goal of generating funds and raising awareness.	Football → Competitions ¹⁰⁷²	box ¹⁹⁸² event ⁴⁵¹⁹⁹
fysioleunissenthijssen.nl	Fysiotherapie Leunissen Thijssen	The practice values personal attention to the patient and offers a wide range of services, including treatments for complaints related to the musculoskeletal system, weekly movement activities, and fall prevention. The team consists of experienced physiotherapists and pediatric physiotherapists, with specializations such as ParkinsonNet, Shoulder Network and Manual Therapy. There is also close collaboration with other healthcare providers. The practice is located in two locations, Hulsberg and Valkenburg, and also offers home visits. They also regularly sell new artwork.		artwork ²²⁴⁸ patient ⁴⁰⁸² physiotherapy ⁴⁶⁸⁸ care ¹²³³⁸ treatment ²¹²⁰³	Beekdaelen → Hulsberg ⁸³
symptomatrix.nl	Marijke Foundation	The e-book, titled 'a matter of time', highlights the importance of timely diagnosis and treatment of these conditions. The Symptomatrix, an online tool, can, according to practice, save weeks to months of time. The e-book is available in five languages (Dutch, English, German, French, Spanish).
hersentumorinformatiecentrum.nl	Brain Tumor Information Center Netherlands	The website includes information about different types of brain tumors, such as gliomas, astrosytomas, and brain stem gliomas, as well as specific treatments and prognoses. There is an overview of symptoms in adults and children, diagnostic procedures and treatment options, including radiotherapy, chemotherapy, and experimental treatments. Furthermore, the website offers information on practical matters such as peer support, rehabilitation, financial assistance, and support for coping with the impact of a brain tumor on daily life.		brain tumor ¹⁷ symptoms ⁵⁵⁸ diagnosis ¹⁴⁹⁰ patient ⁴⁰⁸² treatment ²¹²⁰³
stichtingbenthe.nl	Stichting Benthe	The website provides information about lymphatic malformation, a rare congenital condition characterized by swelling and other complications. The website's blog section offers updates on Benthe's fight against the condition, including information about the Sirolimus study and her plans to travel to Boston. The foundation seeks donations and support to provide Benthe with the necessary treatments and care.	Animal Welfare → Animal Protection ¹⁷³	donation ⁵¹¹⁰ blog ¹³³⁹²
accinfo.nl	psyblog.nl	The website explains what the Corpus Callosum is: a large bundle of nerve fibers connecting the left and right hemispheres of the brain and is essential for communication between them. The article describes how the Corpus Callosum develops during early brain development and its relationship to other brain areas, such as the cerebrum, the limbic system, the cerebellum, and the brainstem. The website emphasizes that ACC is a rare condition, affecting approximately 1 in 2000 people, and lays the foundation for the nervous system already in the third week of pregnancy.	Science → Biology ⁴³⁷
combo-studie.nl	Pancreatitis Working Group Netherlands	The COMBO study is designed to improve the treatment of chronic pancreatitis in the Netherlands, as this is a relatively rare and poorly understood disease. Visitors can find background information about the study and chronic pancreatitis, log in as a patient or healthcare professional, and download study forms. An expert panel is available, and the research team offers contact details for questions or comments.	Medical Research → Clinical Trials ⁶¹	combo ⁵⁹ study ⁷²⁰
crescopharma.nl	Cresco Pharma	Cresco Pharma is committed to improving the quality of life for seriously ill patients, particularly those with Cystic Fibrosis. The company offers a range of products, including Vantobra® and Tadim®, which are antibiotics administered via a nebulizer to treat chronic lung infections in CF patients. Cresco Pharma has a state-of-the-art laboratory with a laser diffraction machine, which performs in vitro aerosol measurements to analyze the deposition of inhaled medications in the lungs.		nebulizer ¹¹ laboratory ⁴⁷⁸
krachtdoorzeldzaamheid.nl	Robin Schoffelen	Robin shares her personal journey with neurological amyotrophy, an autoimmune disease that leads to muscle weakness in shoulders and arms, and which, in her case, resulted in a temporary paralysis of the throat. In her blog, she describes the physical and mental challenges of her rehabilitation journey, with the aim of supporting and inspiring others. The website also includes a handbook 'Positive Feelings' and updates via a newsletter, as well as links to social media where Robin shares her daily life and experiences.	Social → Personal Blog ²⁷¹⁸	update ¹⁶³ handbook ¹⁹⁴ rehabilitation ¹⁵¹² social media ³³⁴² blog ¹³³⁹²
liztegenms.nl	Liz tegen MS!	Liz Bentvelzen, a student of Travel & Hospitality from Leidschendam, received a diagnosis of Multiple Sclerosis (MS) in May 2023 after experiencing symptoms in her leg and numbness. The website details Liz’s personal struggle with MS and her desire for a stem cell transplant in Mexico to treat the disease. The website encourages visitors to donate to Liz’s care and provides links to her social media profiles (Instagram and TikTok).	Personal → Personal Stories ¹⁰²⁷	stem cell transplant ¹² multiple sclerosis ³⁹ tiktok ¹⁷⁶ instagram ¹²¹⁶ school ⁷⁸⁵⁶	Leidschendam-Voorburg → Leidschendam ¹⁰⁴⁹
longfibrose-leukemie.nl	Stichting Longfibrose en Leukemie	The foundation was established in 2018 after discovering a lack of research into this combination of diseases. The foundation supports research into genetic abnormalities that can lead to longfibrosis and leukemia, aiming for an earlier diagnosis and better treatment. The foundation raises funds through donations and subsidies to achieve its goals.	Charities → Fundraising ¹⁰⁰⁵	leukemia ¹⁷ disease ²⁸⁵ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
oog-genootschap.nl	Oog Onderzoek Genootschap	The association works towards structural fundraising, an active and engaged membership, and a flexible organization. A donation of €315,562,- has been granted to the REPEAT study, a research into retinitis pigmentosa and the effectiveness of gene therapy, under the leadership of Prof. Dr. Camiel Boon. A webinar was organized with Prof. Dr. Camiel Boon and Prof. Dr. Arthur Bergen to share knowledge about hereditary eye diseases.	Medical Care & Services → Ophthalmology ⁹²	gene therapy ¹⁰ disease ²⁸⁵ study ⁷²⁰ donation ⁵¹¹⁰ research ⁸⁹⁶⁷	Amsterdam → Southeast ⁸¹⁵
phpalbright.nl	Niet vermeld	The website offers a comprehensive overview of these conditions, including diagnosis, symptoms, characteristics, treatment, and prognosis. Background information and relevant photos are also presented. An extensive collection of links to useful resources, support organizations, regulations, and educational materials is available.		php ²⁸² symptoms ⁵⁵⁸ treatment ²¹²⁰³
rebras.nl	Rebras	The site focuses on Cyclic Vomiting Syndrome (CVS), Cyclic Bronzing Syndrome (CBS), Cyclic Nausea without Vomiting Syndrome (CNVS), Cyclic Vomiting Nausea Syndrome (CVNS) and other related conditions. It offers support and information for individuals experiencing these rare conditions, emphasizing that they are not (anymore) alone. The website includes a blog, a symptom diary, and links, alongside information on therapies, medications, and nutrition.	Mind & Body → Self-Care ⁶⁹⁸	abdominal pain ¹⁵ syndrome ²¹ therapy ⁷⁴⁴⁸ blog ¹³³⁹²
scanct-vlinderkind.nl	Stichting Vlinderkind	The website describes the ScanCovery Trail, a yearly tour of approximately 7,000 kilometers, organized to raise awareness of the foundation and collect donations. Max Mulder and Martin Bossenbroek will be participating in this tour in January 2018 in Scandinavia, with all proceeds going to Stichting Vlinderkind. Stichting Vlinderkind was founded by parents of children with Epidermolysis Bullosa and focuses on funding scientific research under the direction of Professor Doctor Jonkman in Groningen.	Disease & Treatment → Medicine ¹⁰¹⁷	researcher ²²⁰ tour ²³¹⁵ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷	Netherlands → Groningen ²³⁷³⁴
shirley4cf.nl	Shirley4CF	The team has already raised over €19,000,= through the CFChamps event in 2013. People with ideas for activities can contact the organization to brainstorm. Donations can be made to account number IBAN NL23RABO015.90.49.377, with the designation "donation Shirley4CF".	Social Services → Welfare ¹⁰⁰¹	account number ¹⁹ facebook ⁸⁵⁰ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
stichtingbcdedorschkamp.nl	Stichting Behoud Cultuurlandschap De Dorschkamp	The foundation was founded in 2015 by local residents due to the expansion plans for the Wageningen golf course threatening a beloved recreational area. The foundation’s goal is to promote the continued agricultural use of the farmland and ensure accessibility to the public area around these lands. The foundation collaborates with various organizations, such as Mooi Wageningen and Natuur & Milieu federatie Gelderland, and actively informs the community and recruits volunteers.	Green Spaces → Landscape Management ³⁸¹	recreational area ²⁶ farmland ⁴⁷ board ³⁴³⁸ volunteer ⁸³⁶⁷	Gelderland → Wageningen ¹⁹⁴⁹
stichtingmetamandy.nl	Stichting MetaMandy	Approximately 800 children are born with metabolic diseases in the Netherlands each year, and half of them have no treatment and often die prematurely or develop severe physical and mental limitations. The foundation focuses on providing support and raising funds, including a wheelchair bus to facilitate transportation. In 2022, Stichting MetaMandy raised €10,000 through donations and activities.	Philanthropy → Donations ¹⁴⁰	wheelchair bus ⁴⁶ donate ⁷⁷ foundation ⁶⁶⁷⁸
stichtingteun.nl	Stichting TEUN	The foundation was established by the parents of a boy with Emery Dreifuss, realizing that no research is being conducted into this rare disease by the pharmaceutical and medical industries. The website provides information about the Emery Dreifuss disease, rehabilitation, research, and the foundation’s activities. The foundation aims to support parents and children with this disease, conveying the message that they are perfect as they are.	Social Organization → Child Welfare ¹¹⁴⁷	brother ⁸³ disease ²⁸⁵ future ⁴⁰⁴ parent ⁴³¹⁸ foundation ⁶⁶⁷⁸ research ⁸⁹⁶⁷
firmfoundation.nl	Firm Foundation	Firm Foundation has applied for a designation as an Algemeen Nut Beogende Instelling (ANBI), which means that donations are deductible for the tax authorities. The foundation's goal is to support society financially from a Christian perspective. The website contains information about the board of directors, including the chairman, treasurer, and secretary, as well as the remuneration policy, which states that the board members receive no compensation but are entitled to reimbursement of expenses.	Charities → Fundraising ¹⁰⁰⁵	policy plan ¹¹⁴ anbi ¹²⁰ annual report ⁸⁷⁷ board ³⁴³⁸ donation ⁵¹¹⁰ foundation ⁶⁶⁷⁸
mohrenco.nl	Mohr and Co	Marlies Mohr provides strategic policy advice in the areas of communication, organization, and transformation, aiming to guide organizations in achieving new goals. She is involved with Orange Babies, an NGO dedicated to the self-sufficiency of children, adolescents, and mothers affected by HIV in South Africa, Namibia, and Zambia. Marlies Mohr is also the Director of the Schildklier Organisatie Nederland (SON), a patient organization representing the interests of people with thyroid disorders.	Politics → Advocacy ⁶⁴	patient organization ¹⁶ ngo ²⁶ healthcare ²³¹⁶ strategy ⁹³⁷⁹ communication ¹⁰¹⁶²	North-Holland → Amsterdam ⁴¹²⁵³
jobkwffonds.nl	Job KWF Fonds	The website describes the personal experience of a family member whose grandson died of Ewing Sarcoma, a cancer that occurs relatively frequently in young adults. The website defines Ewing Sarcoma as a rare and malignant form of bone cancer that can develop in bones, muscles, and soft tissues. The website explains that Ewing Sarcoma is rare in the Netherlands (30-35 patients per year), primarily affects young people between the ages of 5 and 30, and the cause is still unknown.	Diseases → Cancer ⁵⁴⁶	crowdfunding ²⁴⁶ cancer ⁶³¹ fund ¹⁰⁶³ donation ⁵¹¹⁰ research ⁸⁹⁶⁷
comiteweesgeneesmiddelen.nl	Committee for Orphan Medicines	The Committee for Orphan Medicines is a collaboration of companies that focuses on the development of medicines for rare diseases. An orphan medicine is defined as a drug for a disease that does not occur more frequently than 1 in 2,000 people, and there are more than 7,000 different rare diseases in the Netherlands. The Committee for Orphan Medicines strives to overcome obstacles that hinder access to these medicines and to find solutions that are sustainable in the long term.	Associations & Groups → Industry Associations ⁵⁴⁸	rare disease ¹² patient ⁴⁰⁸²
documentairekaran.nl	Documentaire Karan Foundation	The website contains information about the ‘Jaikaran: Jump or Fall’ documentary, which tells the story of Karan Ramnandanlall’s life, including trailers and excerpts. The documentary was shown in 2017 in Warnsveld, 2018 in Paramaribo, and 2018 in Zutphen, exclusively for donors and guests. The foundation has been financed thanks to a network and presents financial overviews, policy plans, statutes, and a committee of recommendations. Karan died in 2014 in Arnhem after a coma due to ANE, a rare genetic disorder.	Film → Documentaries ⁸¹³	donor ⁷⁵⁷ documentary ¹⁰⁸¹ foundation ⁶⁶⁷⁸ network ¹¹¹²³	Zutphen → Warnsveld ²⁵⁵
blognew.dolfvdberg.nl	UMCU	In 2011, Dolf van den Berg was diagnosed with myelofibrosis, a rare bone marrow cancer that transforms the bone marrow into connective tissue and impairs blood cell production, causing fatigue and a weakened immune system. In 2012, he suffered a complication in the form of an infection with Streptococcus A (a flesh-eating bacteria), which necessitated surgery to remove tissue from his chest and postponed the stem cell transplant. Subsequently, in 2014, he developed acute leukemia, which was successfully treated with chemotherapy in April 2014 and ultimately defeated, after which he was re-admitted for a stem cell transplant.	Personal → Personal Stories ¹⁰²⁷	stem cell transplant ¹² leukemia ¹⁷ bacteria ⁹⁵ surgery ³⁶⁵
vanlunzen.recoverix.nl	recoveriX Neurorevalidatie	recoveriX is a neurorehabilitation approach that utilizes brain-computer interface technology to improve motor skills in patients with strokes or multiple sclerosis. The treatment works by having patients imagine hand or foot movements, with recoveriX providing real-time feedback via muscle stimulation and visual simulation, leading to neuroplasticity. recoveriX can help reduce pain, spasticity, and tremor, and can supplement physiotherapy and occupational therapy for a faster and more successful recovery.	Disease & Treatment → Medicine ¹⁰¹⁷	neuroplasticity ¹⁰ multiple sclerosis ³⁹ stroke ⁵¹ rehabilitation ¹⁵¹²	Noordoostpolder → Emmeloord ¹⁶⁴⁹
vriendenvanrevalidatieinfriesland.nl	Stichting Vrienden van Revalidatie in Friesland	The foundation supports rehabilitation patients in Friesland by offering toys, (game) computers, cozy gatherings and opportunities for sports and exercise. Due to a governmental merger in 2024, the foundation has a new legal form and is now called Stichting Vrienden van Revalidatie in Friesland. The foundation now focuses more broadly on supporting patients, not only through Revalidatie Friesland in Beetsterzwaag, but also via other institutions. The board consists of enthusiastic volunteers committed to supporting rehabilitation patients in Friesland, each with their own expertise.		rehabilitation ¹⁵¹² board ³⁴³⁸ patient ⁴⁰⁸² donation ⁵¹¹⁰ volunteer ⁸³⁶⁷	Netherlands → Friesland ²⁷⁹¹¹

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Title:

Description:

About the site:

Website created by József Jároli. Initial release, site is still under development.

Legal disclaimer:

This directory contains links to third-party websites. All information displayed originates from the respective websites and has not been fact-checked or endorsed by us. Promoted listings are clearly marked as such. We do not assume any responsibility for the accuracy, completeness, or reliability of content found on linked websites. Users access external sites at their own risk.

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